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Support Group: Parents' Stories

 

     Below are some of the thoughts and feelings I've experienced since the death of my daughter.  Other peoples' stories and comments will be added as they are received.  If you have a story or comment you want to share, click on Comments.  Scroll down to continue viewing.

 

     If you are reading this page because you have lost a child you have my deepest and most heart-felt sympathy.  I don't have any words of comfort for you because there are none to give.  You have unwillingly joined a club for which I wish there would never be another new member.  The pain you are experiencing is likely to be worse than any other you've known before or could possibly imagine.  It certainly has been for me.  If you have not lost a child, pray that you never do.   And I encourage you to make the most out of every moment with the child or children you still have.  If you know someone who has lost a child please read on also.   Maybe you can better understand what they are going through and maybe you will be better able to help them through it.
     You have probably often heard the phrase, "Time heals."  I have had other people who have lost a child tell me and it has been my own experience this is not true.  In fact, some days it seems the pain is only getting worse.  I don't mean to say every day is worse than the one before it because that is not the case either.  But to believe I will ever be "healed" or this pain will ever completely go away, I think is an unrealistic expectation and one I have long since abandoned.
     Besides the obvious, other things may change for you as well.  I have been at the store and seen people I know.  When I walk toward them to say hello they have turned and walked the other way as though I wasn't there even though I know they saw me.  I don't understand why people do this.  Maybe it's because they don't know what to say to me.  Maybe it's because they feel uncomfortable around me.  Maybe it's because they want to make me feel better but don't know how.  So they find it easier to simply avoid the situation all together.  I wish I could tell these people that being ignored hurts.  It only adds to my pain and makes me feel more alone.  I wish I could tell them they don't have to try and make me feel better but only acknowledge that I am here and am going through something they don't understand and that they wish me well in my struggle.
     I have had people tell me they know exactly what I am going through and when I ask if they have lost a child they say, "No, but..." and then proceed to explain their trauma which they believe gives them insight into my feelings.  To these people I would like to say, "If you haven't lost a child, please don't tell me you know exactly what I'm going through, because you don't.  You can't possibly imagine my pain.  Equating your loss to mine only lessens what you think of me.  I'd rather you simply gave me credit for going through and surviving an ordeal worse than anything you have experienced." 
     I have had people tell me that God would never put in front of me something I couldn't handle.  I want to say to these people, "I don't believe God would ever take my daughter from me at age sixteen to somehow test the ability He gave me to handle adversity.  My daughter died, period.  My belief in God and in a life after death where I will see her again someday is the one thing that keeps me sane and gives me the strength to move forward each day."
     To my family and friends I want to say, "If I don't seem like myself someday, it's because I'm not and will likely never be again.  I am not the same person I was.  I have lost someone too dear and precious to me to ever be the same without her.  Please don't expect me to be the same.  Don't expect me to get over losing her.  I am still your daughter, your sister or your friend though and I still need those relationships in my life just like I always have.  Please don't add to my loss by avoiding me or the subject of my daughter.  It's okay to talk about Charity.  It doesn't hurt me to hear her name mentioned.  In fact it does just the opposite.  I love to hear her name, to listen to stories about her or to relive experiences from the past."
     On Charity's 17th birthday I invited some of her closest friends over.  We all sat around a bonfire, this group of kids and me, and told "Charity stories."  Most of them I had not heard before and I even learned a few things about Charity that I didn't know.  It was a wonderful experience.  I hadn't felt that good since she died.
     To those of you who have not lost a child but know someone who has remember they need you now more than ever.  But please don't expect anything from them, they have enough to deal with already.  And even though it may be difficult or uncomfortable to be around them, please don't avoid them or avoid talking about the child they have lost.  It will only make them feel more isolated and alone.
     To those of you who have lost a child, again you have my deepest sympathy.  I am not trying to tell you what you will or won't feel.  I am not an expert on grief and what I have related here is only one mother's experience.  I'm sure your situation may be different in many ways.  I would suggest though that you don't try to or let anyone else try to fit you or your grief into some predetermined mold.   Everyone's situation and response to that situation will differ.
     Remember you are not alone.  I and everyone else who has lost a child do understand what you are going through.  It is likely the most difficult thing you will ever have to deal with.  I commend you on making it this far and I wish you well in your struggle.

                                                                Sincerely,
                                                               
Judy Kubalak

 


     The website brought tears to my eyes.  Not only is the story so touching, I too live with idiopathic cardiomyopathy.  I was diagnosed when I was 26 which was a shock to everyone, including myself.  After 7 years, I'm still here but sadly enough, I lost a friend to cardiomyopathy several years ago just when things were going so well for her.  It's a scary disease because of the unknowns involved.  Your daughter was such a brave person for enduring all the tests and procedures that the doctors ordered.  I know there's times when I tell myself that I never want to see another needle again!!  I feel that I was given this disease to teach others that you shouldn't take life for granted.  Live each day as if it was your last.  I can't imagine what you are going through but I know that time will heal.  It doesn't seem fair that God would take a child from you that still had the majority of her life to live.  Thank you for posting your website on the internet and sharing your story with others. 
                                                               Shari

 


Hello.  My name is Stephanie and I was browsing the internet for information on Dilated Ischemic Cardiomyopathy.  I lost my father at age 49 back in May of 1998 due to one of these silent killers.  He did not even have any pain from his condition until late 1995.  Less than three years later he was gone. 

As I entered the website I read the information on cardiomyopathy not knowing why this site was set up.  Near the end it dawned on me why this information was here.   As I read the section about Charity I could not hold back the tears.  It is bad enough to be angry at a stupid disease for taking away a 49 year old retired navy man who has seen much of the world and raised two children of his own, but listening to the heartbreak you are going through......

I'm not sure why God takes children.  It does not seem fair.  But after reading your story I wondered if Charity was meant to be a child.  She sounds more like an Angel.  One that came to you to warn you about a potentially fatal birth defect.   Besides, most children I know would not be as unselfish as Charity.  It sounds like she had many qualities not usually bestowed upon earthly children.

I'm going to plant Foxgloves in my garden in memory of my father.  I read that Digoxin is made from Digitalis, the formal name for Foxglove.  Digoxin was one of the pills that kept my father alive for the extra time after his open-heart surgery.  I'm also going to plant white ones in memory of Charity because her story made me realize how lucky I was to have had my father around for all the years that I did.

                                                               Stephanie

 


Hello--
     I'm a 22 year old from Minnesota who just lost my grandfather on Father's Day morning (Mon. 21, '99).  I was asked by my father to prepare and write a eulogy for the funeral on Wednesday.  I discovered your site when I was trying to find something on the web that explained a little more about what a eulogy should entail.   I've gone through and read about Charity and by reading her story and all the letters and poems that friends have written, I think you've helped me understand better what wonderful memories and feelings can come out of losing someone special.  I was touched and feel stronger, which I'll need especially in the next few days.  Thank you for sharing your story and remember to say "I love you" to someone each and every day :) Thanks! 
                                                               Matt

 


I am a 22 year old man suffering from idiopathic cardiomyopathy with associated atrial tachycardia.  I am the only person in my family that has ever had this disease.  I am in pain most of the time.  I was diagnosed at age 16 when I passed out during baseball practice.  I have been struggling ever since.  I do my best to pretend everything is fine, but I feel like I may not have much time left.  My doctors have tried several medications to control my disease.  So far the medications have only brought me adverse side effects like, nausea, fatigue, insomnia, stomach pain, joint pain, headaches, and depression. 

In January of 1998 I had a crazy heart rhythm that put me in the hospital.  The doctors tried some new medications on me that caused bradycardia and nearly killed me.   I was in the hospital off and on during that year.  On August 17, 1998 I had a risky surgery called a catheter ablation that was a potential cure for my tachycardia, which might have also cured my cardiomyopathy.  During the surgery the doctors induced a dangerous rhythm called fibrillation.  The doctors had to electrocute me with a defibrillator to reset my heart.  I woke up screaming when the doctors sent the electricity through my heart.  My family and friends who were waiting in the hall could hear my screams of pain. They did this three times before they aborted the surgery.   The doctors told my family I wouldn't remember any of it.  I wish they were right, but I don't think I will ever forget.  When I awoke in my room my family broke the news to me, my surgery had failed, nothing was better, but I was still alive.

Today (11 months after surgery) I am not taking any medication, except a lot of children's chewable aspirin; it thins my blood and helps with the pain.  I still have episodes nearly everyday, I fear that my life is going to be cut short, but I am not willing to continue with anymore treatment. 

Your daughter's story has touched my heart, I never knew Charity Mae when she was alive, but I must say I feel strong love for her.  I don't know why life has to be so difficult, but it is, and I am sorry.  I wish I could ease your suffering…

Take care,  

ZANN
S.L.C. UT
"Obi Wan Konobi you're my only hope…"

 


I lost my niece last year to Cardiomyopathy and I loved her very much.  I miss her everyday.  I am getting married in 3 weeks and wish desperately that she could be with us.  Although I know she will be there in spirit it just isn't the same.

Our family has felt a tremendous loss and I know that we all think of her daily.    I don't always understand why young people have to die, but I guess one day I will.    I think that heaven must be such a great place and that she misses us, but that she is doing fine and feels at home.

Her mom has had a very difficult time with her death and I wish I could make it better for her.  There is nothing that our family can do but listen and pray and hope that she gets through this.  As a family member you feel such pain for her and it is such a   helpless feeling.

I know that my niece will be with me in spirit at my wedding.  I am leaving a space for her knowing that she would be in  the wedding if she were with me today.  I hope one day there is a cure for cardiomyopathy but I wish someone found it earlier.

L.

 


                                                                                         08-22-99
Dear Judy:
     I have read your story about your daughter Charity and it broke my heart. I had experienced the exact same situation word for word. My first born had cardiomyopathy (IHSS) his name was J.P.  I don't think there is a need to tell our life story for it was very close to yours.
     I had my son young and nobody to help me raise him for a year and a half. I had met a wonderful man name Joe who took J.P. and I under his wing.  His natural father came in the picture later on in J.P.'s life when not needed!    J.P. was seeing a doctor here in Windsor Ont. on a regular basis as well as London Ont. They felt J.P. didn't need any medication even though he was as he put it feeling weird at night, as well having fainting spells. 
     Joe had asked me to marry him and the date was set for September 12, 1992.  J.P. went on vacation with his father's wife's, brother to London Ont, where he collapsed (VSA)  Doctors in the hospital brought him back to life. He then was in a state of coma for 9 days. I cried and cried he was my first and my Special Little Man.  I had lost myself somewhere in the dark, decision making was left to his natural father.
     He took it upon himself with the doctors to remove him from the life support system. I had, at the moment of time told the doctors No but they had papers signed and continued what they wanted to do. Judy I did agree if he went into cardiac arrest to let him go,  But not take his 11 years away from him in 9 days, he was always a slow recovery person, what is done is done! His life ended on my birthday nice of them isn't it?  I never celebrate my birthday anymore. J.P. died September 10, 1992 at 5:39 p.m.
     When I went in the room where this was all going to take place, I was so mad and hurt I was hoping for God to give me a miracle. The Doctor's came in the room with J.P. in their arms and laid  him on me. Judy I didn't let anybody near him. While his last moments where short, days before this I reminded J.P. that it was my birthday coming and the best  present would be for him to open his eyes, of course the wedding was 2 days after my birthday but, I told him that we waited this long we can put  it off again because he was worth the wait, you see J.P. had to be at the wedding it was important for Joe and I . J.P. had his last breath after about 7 minutes he lifted his head up and looked at me, then passed on.
     That moment, that day I will and can't ever be the same again. I had lost a lot of friends and gained very little friends, but learned whom my friends really are. I have a 14 year old son who has cardiomyopathy as well!. His name is Brandon. We read the story on Charity together,  I read it out loud it was very close to my situation that I choked up a lot. Brandon is to have surgery to reduce  the obstruction,
     Judy I think I am not going to be able to handle this situation I am not strong enough to go through this. I'm scared of the whole situation. I feel there is no cure so why put my son through that major surgery and then have something else go wrong. I carry the gene for cardiomyopathy. My mother died when she was 26 and her mother died when she was 31, and her grandpa died when he was 42. He was from the United States. And according to family the list goes on and on.
     I miss my J.P. EVERYDAY.  I open my eyes. I had the exact same dream as you, J.P. had a bubble around his head in the dream in a hospital bed hugging and kissing me like good-byes awake, I left the room for a moment and came back to find him gone the nurse said he passed on. I believe J.P. came to tell me he had died from brain injury, lack of oxygen when he VSAed, I had wrote about this dream in my diary and it is fresh in my memory always. I do not want to go through this again.
     The baby you had Summer is she ok? Or does she have cardiomyopathy as well?. Thank you for reading my sad experience but there is nobody I know who had lost their child to understand, your heart literally dropped and shattered I know I felt it and it will never be the same again. I am using a friend's computer until we purchase one but I'd like for you to give me some advice, Thank You Judy and "God Bless You".
                                                        Lisa

 


     First, I would like to express my deepest sympathy for the loss of your child, Charity Mae.  She sounded like an extraordinary child, &
was beautiful.  My husband of 39 has been diagnosed with a cardiomyopathy which I'm confused about.  He first went into the hospital with a rapid heartbeat & was in A-fib.  Nobody was alarmed, but when they did an echo, his ejection fraction was 25%.
     He has been in & out of A-fib for 8 weeks, he was cardioverted twice & is on every heart medication conceivable.  The doctor thinks that if he stays in normal sinus, his heart will get stronger.  If he calls this a cardiomyopathy, does this mean that his heart will get back to normal forever, or does it mean that he will always have a problem with his heart?  The Drs. do not say more than they absolutely have to.  Did you find that to be the case?  Is it because they really don't know?  I've read stories about people living with this for a long time, but then some people who die right away.  My husband is totally asymptomatic, his heart has not dilated, but remains weak.   The Dr. said if he goes into an A-fib one more time he will perform a catheterization next.

 


To everyone close to Charity Mae.  I am a freshman in college. Leaving high school, I went through the same sadness and reflection as any other senior across America.  I remembered back to graduation knowing my class would never stand as a whole ever again.  There was one major difference that set my  Bernards High senior class apart from other schools graduating that day.   We were advancing our lives leaving one behind.  My sophomore year God took our remarkable  friend from our close-knit town.  It was Colin's sixteenth birthday and I'll never forget the beautiful  sight of an entire cafeteria of young and old breaking out into song honoring 16 years of our king's life.  He was a natural born athlete.  Run the floor Colin, win this one for us Colin, get the ball Colin.  Deceivingly our beautiful Colin's young strong heart was much too impressive to question.  April 21, 1997 those questions arose
when an entire school; our family found out Colin was gone.  We lost Colin to undetected hypertrophic cardiomyopathy.  We had learned that sudden cardiac death was a growing issue for athletes in freshman year health class, but never thought it would happen to our best.  Your webpage is an enormous comfort for me and a few of my friends with whom I discretely share it with.  For other friends it would be too much strain on their eyes.  I have found great solace in reading the many letters and poems written by kids I could be best friends with.   About a year after he died I created a webpage in memory of our angel and I thought that you might want to take a look at it.  It focuses more on his life than his heart problem, but still you may be able to see my webpage as I have seen yours.  I hope that maybe in some way I can ease your pain.   Thank you for helping me through many tough sleepless nights.
Sincerely, Carrie

www.geocities.com/southbeach/sands/6271/index.html (Click on the "Colin's Page" link when you first open the address.) 

God saw you were getting tired and it was not meant to be,
so He put His arms around you and whispered, "come to Me".
With tearful eyes we watched you, and saw you pass away,
although we loved you dearly we could not make you stay.
A golden heart stopped beating, hard working hands at rest,
God broke our hearts to prove to us He only takes the best.

 


I am a 17 year old attending high school at the present time and I visited your site to try and find more information on the disease my mother had and died from after giving birth to me,  CARDIOMYOPATHY.  I don't really know much about it just that it is hereditary and I am scared.  It's been hard to live without a mother and I know how you feel even though I didn't see my mother suffer.  I really like your website.

                                                                                             Angela

 


What a beautiful tribute to your daughter, we just lost Keli 3 weeks ago to Cardiomyopathy, IHSS. She was 28 years young and left behind 3 lovely daughters, and a husband.

Although Keli knew about her condition, I truly do not believe she realized how fatal it could be. She loved Jesus and lived her life with him and tried very hard to be a good mother and wife. We will miss her so much. It is very hard to face the reality that she is gone from the life we know here on earth.  

Thank you for your web site. I don't feel so alone.

Cheryl

 

Exactly a year after you lost your dear Charity, I lost someone special to me. He was my 16 yrs. old cousin and lived on a farm up north. Then one night in early Feb. he was accidentally shot and died a half hour later. The one thing that really broke my aunt's heart was that everyone found out about the death before she did because she was in Las Vegas with her husband and they could not find her so they had to call around to all of the casinos. I never had anyone that close die before. maybe my grandpa, but I was too young to remember him. Your story on Charity touched my heart. She was really beautiful. I visit her grave every once in a while. She sat two in front of me in English our sophomore year. I know Charity touched everyone's hearts.


     I found your website to be very touching.  Just from reading what you have posted here, I can understand why Charity was loved so much by everyone.   I lost my mother to idiopathic cardiomyopathy almost a year ago.  She was only 44.  The year anniversary of her death will be Nov. 11, 1999.  I can truly understand the pain that you have endured and probably still do.  As time has progressed, I have been able to deal with her death better day by day.
     My mom was my biggest fan and supporter.  She believed in me when no one else did.  The one thing that has been difficult for me is that my mother had a hard life.  Nothing ever seemed to really go right her, and even though she could have been bitter because of this she wasn't.  She always had a positive outlook and did not want anyone to worry about her health.  I admire her for her attitude and outlook on life.  She taught me a great deal about myself, and gave me the determination to pursue my dreams.  For I know that even though she is not here physically, she is with me in spirit watching over me.  I know that I can never repay her for her love and the sacrifices that she made for me.  But, I do know this, if I can make my dreams come true and achieve my goal (she knows what that is), I know that she would be happy and very pleased with me.  That would mean everything to me.
     Even though my mother's death has not been the easiest thing to deal with, I can rejoice in the fact that I know that she no longer has to suffer with her illness.  I know that she is with God and I know that I am going to see her again someday.  I give thanks to God for that.
    Jon

 

First, I wanted to say how sorry I am for you and your family's loss. Thank you for providing the  imformation on cardiomyopathy.
You have helped me tonight with a lot of questions that my doctor hasn't yet answered. I should state that I'm 41 and was diagnosed with IDC 2 years ago. Two weeks ago I had my yearly exam (echocardiogram) and my ejection fraction went from 50-55 to 30-35. My doctor in Houston called and passed on the results and he wants me to come in for additional discussion for a stepped up plan of action. To say the least, this has scared my wife and my myself tremendously. We are hoping
for the best, but this week hasn't been easy.    Thanks once again  - Tim

 


Dear Judy,
     I was searching for sites about familial non-ischemic dilated cardiomyopathy when I found your....Charity's web page, but I found so much more.
     Since my son (also my first-born), Phillip, age 20 years old died suddenly on December 2, 1997, about 6 wks before your Charity, I have read many articles about and by grieving parents, but your pages come closer to describing my thougts and feelings more accurately than any before.  I have sobbed tonight with pain and with a feeling of recognition and have found some relief in this.  Thank you so much for sharing your experience, thoughts, pain and feelings.
     My son had a pacemaker since he was 5 years old due to congenital complete heart block. But he died suddenly and unexpectedly that morning (after dropping me off at work at 6:30am, my middle son found him on the floor in my room at 9:15am and EMT was called but could not revive him). Three weeks after his death, I was experiencing palpitations and shortness of breath that resulted in several tests and cardiomyopathy and complex arrhythmias were discovered. This led my son's cardiologist to believe that Phillip, too, must have had a cardiomyopathy with ectopic arrhythmias that led to his sudden death, unrelated to his pacemaker or congenital defect.  I have since learned that my middle son, Greg, now 19 years old has a mild cardiomyopathy, my daughter is currently within normal ranges with EKG and echo.  My mother's father died from a reported "heart attack" at 43 years old in 1950 and her maternal 1st cousin died from cardiomyopathy several years ago and her son, about 47 years old also has cardiomyopathy.
I can't thank you enough for your web-site. You are truly a blessing to me tonight.
     God bless you and your family.
Sincerely,
Cyndi

 

Dear Judy,

     I first want to say my prayers are with you.  I can't even imagine going through the loss of a child.
     The reason I'm writing is we just found out today that my sister has cardiomyopathy.  About a year ago, we found out that my brother has it also.   I also have a first cousin that has it.  We are devastated, not understanding what is going on.
     My sister's heart is at 33% and my brother's is at 22%.  I'm not sure what type it is yet, still asking questions from the doctor.  I found this site trying to find any info that I can.  We're asking ourselves, is this hereditary.   The doctor only says it can be.
     Any help in understanding this "beast" would be greatly appreciated.

Thanks, Donna

 

Hello Judy - I don't know you and I happened upon this site by chance and read it for almost 2 hours.  I am deeply touched by it and although I haven't lost a child and don't know anything about cardiomyopathy I will say that just by reading this site that you and your Daughter Charity Mae had one of the most special relationships that I have ever heard a Mother and Daughter having.  God keep you and your family as I am sure he keeps special Charity Mae.  Thanks for this site.
Lisa from Philadelphia, PA

 

Dear Judy:

     I am so sorry for your loss.  I came very close to losing my son in December '99.  He suddenly came down with cardiomyopathy, the doctors still are not sure of the cause.
     He actually did die in the E.R., they were able to revive him.   We then spent three weeks at Stanford Hospital.  He is home now, but must take 4 different medications.  The doctors are hoping that his heart may begin to get stronger, but we also have the arrythmia problem.  My son, Tyler, is 16 yrs old and has never had a heart problem until now.  I have truly placed Tyler in God's hand, I had to....I was so terrified of losing him.  I knew that I had to begin to trust God with my son, no matter what the outcome.  It was the hardest thing I have ever gone through.
     Thank you so much for sharing your daughter's life with us.   I don't think there is anything I can say that would make you feel any relief, except that I am praying for you and your family.  May God Bless and keep you .

Very truly yours,
    Dawn

Dear Judy,
     I understand what you are going through. About 7 years ago I lost a loved one, (my aunt) over Cardiomyopathy, and 2 years ago I almost lost another aunt, but she recieved a heart transplant, and now today February 1, 2000 my mother just called and said they are going to have to let my aunt off life support. I'm very sad and confused. I feel so bad for my mom right now, she has lost 2 sisters and almost a third over this disease. I'm praying that there is or they will find a cure for it. I know my mother needs all the support she can get right now.                       
                                                                 Sincerely, Dan

 


Judy,
     I was a friend of Charity's in Junior High. I remember she invited me to go camping with you guys.  Thinking back to that weekend, I don't think I've ever had so much fun.  I remember that was the fist weekend I ever tried Wild rice Soup.  That day was so much fun, we rode our bikes for a couple of miles, just for wild rice soup.  On our way back to the camp site, we didn't care, how much energy we had left, the soup was good and that's all we needed.  Although I should be honest with you, Charity had more energy, than I did by far.  She rode way ahead, saying C'mon Alicia, and I was way behind trying not to fall off off the bike, and die.   But yes Judy, Charity did have a lot of energy, and I'm so glad that she used all of it up on life all around her. Charity was a beautiful person inside, and out.   Everyone loved her, especially for her honesty, friendship, and kindness.
     I do want to say one thing, that she was very lucky, to have had you.  You two were the definition of what parents and children should be. I remember telling Charity in school one day, that I was jealous of her because both of your relationships with each other, I told her she was lucky to have had a mother, because my mother passed away when I was 3 1/2.  I will tell you Judy, that I am a better person today, for knowing your daughter Charity Mae. I miss her extremely much.
     Everyday when I look at her picture, I wished we wouldn't have lost track, after you moved.  I wish everyday she was here for at least 5 minutes and I could hug her and tell her how much she made my life brighter.
     Thank you for every thing, I pray for you everyday.  Oh, one thing that might help you feel better, when you get those days when you think it's not worth getting out of bed, well this is what helps me when I think about my mother, Charity is up in heaven helping Jesus, build your guys' castle, for when you and her reunite one day in heaven.

Sincerely,
Alicia

 

I was the nurse in the Pediatric Cardiology Clinic when Charity came into our lives.  She was a vibrant child and didn't have the words "no" or "I quit" in her vocabulary. Charity always had a positive attitude and didn't let her diagnosis stop her.   What a wonderful example to everyone that had the privilege to have met her.  

Karen

Hello Judy

    My name is Erika and I am from Murphysboro Illinois and I have cardiomyopathy.  My mother died form this disease 3 years ago and my oldest brother has it also.  I am 18 years old and I have known that I have this disease for only about 4 years and I have had it all of my life.   I found this web site out of complete surprise.  You see the guy that I am dating is a cop in my hometown and he belongs to a motorcycle club called the "Blue Knights".  This motorcycle club is a charitable organization and the other day he called me and asked me to come over because he had something to tell me.  So, I went to his house and he sat me down on his couch and told me that at the next meeting for this club he was going to suggest the charity that they donate to have something to do with heart disease.  I was in complete shock that he would do something like this especially being male.  He told me that he needed me to find out the name of a charity that they could contact so that is when I went digging on the internet and found your web site.   Honestly I never knew there were charities strictly for cardiomyopathy.  The Charity Mae Foundation and the Cardiomyopathy Association are the two that I have chosen to give to them.

     I hope that in some way this donation can help others in the future.  I just wanted to let you know that there are people that care.  I know that after my mother died I felt like nobody cared and that heart disease foundations were second to other diseases. My mother finally resorted to a heart transplant but it was too late. Her little body was just too worn out to handle the stress and she never woke up.

     I am going to go for now. You know it is really nice to know that Charity Mae is up in heaven with my mom watching over all of us. Talk to you later. God bless!

Ericka Nicole

 

Hi
I just happened to see the benefit article in the Forum.  I was not able to go, but I checked out Charity's website.  I work at MeritCare and started reading it.   What a wonderful daughter with great memories.
She sounds like one in a million and a person who was special to so many.  Yes, many of the articles made me cry. How lucky you are to be touched by her.  She is for sure your guardian angel.   Thanks for sharing your story.  I'm sure she is smiling down on you.

Dear Mrs. Kubalak,
             My name is Mandy and I live in New York City.  I am 22 years old and I am not the type of person to get very emotional.  Somehow or someway I ended up on this site dedicated to your daughter.  I was so touched by the outpouring of love, pure love, that people in your community had for your daughter.  I probably would have never in my life met your daughter, but in some way, I feel that my life, or at least my day, has been touched by an angel.  Charity seemed to be a great person and a great friend and from what I can see, she got these attributes from her mother.  I hope that in the short time since her passing you have been able to find strength through the thoughts and prayers of those touched by Charity.  I'm sure she is in heaven looking down on you and your family.
                                                                               With Love,
                                                                                     Mandy

Hello Judy,
In July of 2000 my 15yr old daughter Rayven had just returned  home from a one week basketball recruiting camp, she had just been home for 2 days when she was trying out for the Jr. National basketball team in Washington D.C. During tryouts she collapsed to her knee's & complained of severe chest pain but still wanted to continue playing ball. I knew something was very serious when she started turning very pale. I rushed her to the E.R which was right around the corner. Rayven was the star basketball player on her varsity basketball team even though she was just a freshmen. The word had gotten out to the colleges to keep a eye on this freshmen because she was so great in the game of basketball.
When we got to the E.R. they told me they had to transfer Rayven to Children's Hospital because they have better equipment were they can do further testing. It was at Children's Hospital in Washington D.C. when they told my husband and I that our only child has Hypertrophic Cardiomyapathy and that she is  very very lucky to be alive. As I read about you and Charity all I could do was cry. They also tested me and found out that I too have Hypertrophic Cardiomyopathy. After 35yrs I had no clue that I had it until Rayven was in ICU.   I started getting chest pain but I thought it was stress because of Rayven's situation but that's when they did the echo and I found out.
At this point Rayven is in denial that her basketball career is over.
We take one day at a time and enjoy life as much as we can. I thank God for making you strong to make this web site.
May God Bless you & keep you & your family strong.
Samara

Dear Judy,

After reading your website, I wanted just to say God bless you for making such a lovely and moving tribute to your beloved daughter.  I am a pediatric nurse practitioner and have worked for many years caring for children affected by cardiomyopathy and other heart defects.  Even though her life lasted only 16 years, Charity was obviously surrounded by love and goodness.   May she forever live in your heart and the warmth of His love.

I have a friend who has been diagnosed with IDC.  He had been complaining with a mild aching sensation in his left shoulder on and off for about 4 years (began in 1996).  At this time he went to his regular doctor and was told he had an enlarged heart but nothing to be alarmed about (right!).   Well, four years later (2000), he decided to have a cardiologist look into this.   His IDC was discovered and is now beginning Prinivil (5mg) as a start toward a drug treatment regimen.  After one week on Prinivil, the aching in his shoulder has stopped, and there are no signs of CHF at this time.  He is active and can complete a full work day without getting overly tired.  His EJ is 25, which is low but his doctor said we should not get too hung up on numbers....it really depends on how he generally feels that counts.  He is 57 years old with no coronary artery disease.   His doctor is optimistic about his treatment and says I should be too.  I just wanted to relay the fact that there is always  hope and to always keep a positive attitude.
John


     I would just like to say how wonderful you have contributed a web-site for this disease and in memory of your daughter.  I had no idea that there was such a illness, and that it can affect anyone at anytime.  You have done a great  job researching  on this.   You are my age, I do not have any children, so I would not know the pain and loss that you're feeling.
     From reading the Memorial, you and your daughter shared an enormous amount of love for each other, and most of all best of friends.  I have lost 3 good friends in the past 6 months all at a very young age and all from different circumstances. So I do know the loss of losing someone so close to us.  Please continue to do what you're doing.  I  would like to make a donation on this special day 10/7/00 for Charity.
     My prayers are with you and your family.
                                 Lisa

Dear Judy,

     I am not quite old enough to regularly read the obit page, but yesterday was an exception.
     What made it exceptional was that beautiful photo of Charity Mae. Such a fresh and exciting and lovely  face.  Never have I seen a photo which showed such personality, and character.  She must have been quite a young lady.
     And then, I read your poem, and I shed a few tears.  It was truly from the heart, I could tell. Such poetry is rare in these days of television and video games.  And being a single father, it caused me to  wonder if I would ever be able to express such feelings in such a wonderful way, should something terrible happen to my son. (He is now 11.)  I appreciated it so much, that I cut it out, and now carry it in my wallet.
     Being in the television news business, I would like to extend an invitation to you, and to Charity Mae, to be part of a story I would like to do about the disease that took her away.  Even though I have had a couple of heart attacks, I was unaware of Charity's disease until I read about it on your website.
     So this is an open invitation.  Let me know if you would like to go public in this fashion.  If not, I certainly understand.  No matter what you decide, it will not affect the way I feel about yesterday's obit in the Forum.   It was the most beautiful tribute I could ever imagine.  Thank you for it.

Sincerely,
Bruce

Dearest Judy,

               My mom, Patty, told me one day that she had run into an old friend, Judy, in Fargo.  She was telling me about how she had a "very, very pretty" daughter only a year older than me.  She had told me that Judy's daughter died from heart problems, and not ever having met either of you, I felt very sad for the two of you.  I thought about how sad you must feel, but didn't think much about it again.  Just last week, my mom came into my room and put a newspaper clipping on the table by my bed.  I just let it sit there.  When I was about to go to sleep, I looked at the clipping, and I realized it was a girl and decided to read it.  I actually started to cry.  When I saw the website (I just noticed it today)  I came to it, and this is the most beautiful, touching thing I've seen in a very long time.  Of course, I'd been feeling tears well up in my  eyes the whole time, and finally, they started coming down like a rainstorm.  I almost felt sorry for myself for never having had the chance to meet Charity.  I hope that maybe we'll even meet some day.  Thank you.
                                                          Chelsea

Hello Judy,
     Your web site has moved me to tears.  I lost my brother Sean Patrick, 21 years young on September 5th, 2000.  He was 10 years younger than me so, even when he was over 6 foot tall, he was still my little brother. He always came to big sister's bed when he was scared or just didn't want to go to sleep. He was always active in sports basketball, soccer, tennis whatever he could do for good clean fun. He always walked a straight line and was such a good boy!  He was majoring in English literature and wrote some amazing stories!  I'd love to share them with you. He was totally healthy, and his death was very unexpected.  He had gone to get together with some friends before everyone in his group went back to college, and he stayed back while everyone went to get a bite to eat.  He said he wasn't up to it.  When they returned they found him on the bathroom floor and were unable to bring him back.  It took forever for the medical examiner to come back with any answers.  Not like this helped but, they finally did.
     God Bless you and your family.  I hope Summer is growing like a weed and hearing stories about her big sister every day.
Someone who cares in Oregon,
Monica


My name is Barbara.  I too lost a son to cardiomyopathy, he was diagnosed in October of 1998, died January 24, 1999. He was 31, he was married with 3 little girls and another baby on the way, a little boy was born on April 24, 1999. On November 12, 1974 I also lost a little boy to meningitis, he was 12 and a half months old. It is true the pain never goes away, you learn to deal with it and live with it the best you can.  My faith in God also sustained me and keeps me going. I was thrilled that I found your web site.   I had no idea this disease was so prevalent.  Your letter deeply touched me and so much you wrote about I felt also.   I would really like to hear from you, as another one of the people who made a comment you feel so alone.  Your daughter was a very pretty girl, and it is so sad she had to die so young. Your web page has helped me more than words can say.  I was about to go get some counseling, I still may.   Everyday is a struggle, your web page helped me a lot.  Thank you for being there.
Barbara


Dear Judy,
     I just read pretty much everything on your WebPages.  It is very lovely and well put together.  I went to school with Charity in Moorhead.   I went to her birthday party in 6th grade at the Kelly Inn, she was so much fun.   Always a happy girl.  I remember when she got together with one of her boyfriends, she screamed she was so happy!  I have her school pictures up in my room that she gave me.  I still remember the funeral.  That was my first real funeral.  I mean, I've had grandparents pass away, but this was different.  This was someone my age, someone I was friends with, someone I knew.  We had so much fun in Moorhead, she was so special.  We had lost touch when she moved, but I will never forget her.  She still had a huge impact on me when I heard what had happened.   I give you all the support I can and greatly admire you for how strong you have been and how strong you are.  If you ever need anything, don't hesitate to ask.  

Sincerely,
  Leah


Dear Judy,
     We just saw your special about Charity on TV and I had to write and tell you that I, also felt Charity was a  gift from God.  She was one of the most beautiful people I have ever met.  I did not know her long but will never forget her.  You are carrying on her legacy beautifully.  God bless.
Russ, Barb, Matti and Ali


Dear Judy,
     My name is Sue, I live in Australia.  I found your web site whilst looking up information relating to Dilated Cardiomyopathy, as I lost my son 6 weeks ago today.  We had to wait for the coroners report to come back before we knew how he passed away, as he died suddenly and we did not know the reason why till yesterday.   He was only 19 years old, and I am still having terrible problems coming to terms with his loss.
I read what you wrote and really appreciated the words, as it is very similar to what I am starting to go through now.  I don't understand why this has happened, I am still searching for answers, I know the medical reason now why he died, but I still don't understand why. Do you understand what I am saying?  Could you please write to me.   I really need someone who has experienced the same thing to talk to, at the moment I feel so very alone, everyone seems to be getting on with their lives, but I feel like my life is just standing completely still and I don't have the ability to move forward.   I wish the world would just stop for a little while, whilst I try to come to terms with what is happening.


When I was flipping through news channels a few weeks ago I came across channel 4 where I heard your story.  I am  a single parent mom to Amanda who is 13. Amanda has a rare  progressive neuro-muscular disease with cardiomyopathy. Because of her neuro-muscular disease Amanda will never be approved for a heart transplant. I had a choice to start her on Beta Blockers but the side effects were that it would cause her FA to progress much faster and she would be very weak. In fact, it was Amanda who said she did not want to live like that and would rather go " sleeping".  Your story really touched me and thank you for sharing!
Amanda was running in races and riding a 10 speed just three years ago. Today she is in a wheelchair. Her attitude also is unbelievable! A w/c does not slow her down the least! She is a cheerleader and she even rollerblades in her chair. She is one of the strongest person's I know!  And like Charity she is very giving! Her dream is to be a missionary. Thanks again for sharing your story!
Martha


I have watched your website and have read your memorials in the paper, after having your daughter catch my eye upon her passing, those years ago.  There is something truly unique about your daughter, but equally so, is something unique about the mother that so opens her heart to her words.  What a team you two make.  Her passing was not in vain, for what you are making of it, and showing people, through example, how to live and love their children.  You are doing a good work with a very tough job.  God bless your daughter and you.

This morning I finally got around to looking at yesterday's Forum,  I happened to see your memorial for Charity Mae. It really touched me and I had to take a look at this web site. What a beautiful girl Charity was. I pray I never have to experience the pain you must have. The reason it took me until so late yesterday to get to the paper, is that I was at the hospital. My first grandchild was born last night, a beautiful little girl, what a gift from God. It makes me appreciate her even more having seen your memorial this morning. May God Bless you and provide you comfort.

Mark


Dear Judy, I have just read the moving story of your beautiful daughter's life. I had seen a memorial to Charity from you in the paper which also listed your website.  I have not experienced the loss of a child but have lost many people including my mom nearly 2 years ago.  I have also been by the side as 2 families lost their children after bone-marrow transplants.  It was heart-wrenching!  I am writing to thank you for the gift of Charity's life and your memories of her.  I thank you too for the sight of the place where her body lays to rest but her spirit soars.  I hate to admit this, but today I was "feeling sorry for myself" because my son, daughter, & son-in-law were supposed to come this weekend to celebrate my son's 24th birthday.   They didn't come.  But I can still speak to them on the phone, e-mail them, and hug them when I do see them!  Today was put into perspective by visiting this priceless website!  My thoughts and prayers are with you , especially tomorrow on the anniversary of Charity's death.


Dear Judy,  After seeing Charity's web site in the Fargo Forum last week I decided to go into it.  What a beautiful daughter you have. You must be so proud of her. I have a 5 year old son who was born with several problems and to date has had 14 surgeries and been hospitalized more than 25 times. I know exactly what you were feeling when the nurse would come with the IVs and want you to hold her down.  I feel that same pain with Dillon. I see the tears rolling down the cheeks.  They try to be so brave! I hope I will never have to experience your pain but , if I do, I will look to you for the strength.  Your web site is wonderful. I cried while reading each and every article.   Your Charity is in a wonderful place and is happier than any of us! I hope you can find peace in knowing that.   Thank you for sharing your personal story with us.   I use to ask "why" me when Dillon was sick and after reading your stories I will never ask "why" again...I now know the answer.   Thank you!    Jill


I'm very sorry for your loss.  My youngest sister lost her 9 month old daughter Christin to this as well.  It wasn't anything we expected at all.  We didn't even know she was sick.  She started losing her strength and we thought she had a cold.  It was New Years Eve 1999, so we took her to the hospital on Friday night and they told us she may not make it through the night.  She died on 01-02-00.


I have tried for months to find out all I could about this terrible devastating disease. I have Hypertrophic Cardiomyopathy. I have been told it is hereditary in my case my father came from a very large family and only 3 brothers and sisters made it past 48 years old. I was diagnosed 1989 at age 41 our youngest daughter's senior year. For two years I put off surgery because the odds they gave me were not good. Finally I decided I couldn't live my life like this anymore and had open heart. Was better for a time but still was on a lot of medication. Twenty-two pills a day and if I miss any of them I know it. In 1998 I started having more problems and had to have a pace maker put in with a defibrillator. It is so uncomfortable that I can hardly wear a bra. I was told it would probably last 5 years. Well, it's time to change the batteries because it is pacing my heart 80% of the time and the batteries are about shot. I'm trying to decide if it is worth going through another surgery if my heart is that shot.


I saw Charity's poem in an older issue of the Forum.  I had to check out what this beautiful young lady died of.  I read every word about Charity's life.  Your website is wonderful. 
Ellen


I came across this website by accident, but read the entire website. I'm from Maryland. Don't know anyone who has this, but the entire site made me cry. I guess because two years ago, my fiancée passed away, and it was just me and his soon to be born son. Life sometimes is so sad, and yet we still don't understand why certain things happen. It is however, comforting to know that someone, across the world cares enough to give you their deepest thoughts and concerns. Even though two years have gone by, and I have been told by man that life for him in Heaven is much better here, I have a problem understanding that. Maybe it's me who is being selfish, but I think life down here would have been good for him too, then my son could have his father, and they could have that father and son bond. Again, I will pray for you and your family.

Toyshika


Dear Judy
You may not know me but my name is Bethany. I am from Minot and I was really close with Charity.  I think about her everyday and wonder why it had to be her.  I considered her one of my closest friends.  The summer before she passed away we had gone to the movie Spawn.  We both had a blast that night telling scary stories and just making each other laugh.  She was a very sweet person and everyone loved her.   I remember the times when she was coming here to Minot to stay and I was always excited and wondered why it took so long to get here, then I realized why when I rode with one time.  She had to show me her dog and all her stuff.  She is missed very much by everyone in our family.  Her memory will never be forgotten by me.  When you go to talk to her tell her I love her and miss her very much.
Sincerely,
Bethany


Judy, my heart goes out to you. What a beautiful child. I understand the pain you are going through. My daughter Kendra (25 years old) gave birth to her first child on January 11, 2001. Six days later on January 17, 2001, my beautiful daughter was gone. The autopsy stated dilated cardiomyopathy-pregnancy induced. We had no idea there was a problem and had never heard of peripartum cardiomyopathy which is another name for what happened to Kendra. No mother should have to endure the death of a child, but as you know, we don't get to make that choice. I was at the hospital with her from the time they induced labor until she went home. I live about an hour away, so I came home after we got her to the house and settled in on a Sunday night. My sixteen year old son had been there with me the whole time also. We cried all the way home because we missed her already. I talked to her Monday night, and again on Tuesday night. The last thing I told her was "I love you". Wednesday morning she was gone.  I miss her so much.


Dear Judy - I want to thank you for letting everyone read about your beautiful daughter Charity, she is an inspiration.  In 1992 I awoke to a phone call informing us that my 17 year old brother, RJ, had been rushed to hospital after he collapsed playing sport.   He could not be revived.  I will never forget the young Dr who was working on him, she was so upset when she told us that he had died.  Two years previous, we had been told that RJ had a benign arrhythmia that he would grow out of.  At autopsy he was found to have severe idiopathic dilated cardiomyopathy.  How I hate those words.   The agony my parents went through is unmentionable, once my Dad told me that he is now just passing time until he dies and my mother could not look at me for months because RJ and I look so alike.  Everything you have written rings true for me as well.   For many years I had so much hate and fear inside of me I thought I would explode.   I am still scared that I will develop IDC as well ( I am 30 soon), but I am not angry anymore.Thank you Judy.


Dear Judy,
My deepest sympathy for your tragic loss. Somehow, all this time, I've believed that there's nothing anyone can do or say to lessen the pain. But somehow, reading your story comforted me in a unique way. So, I though maybe my story can make you feel a little better even if it's just for a little while. My boyfriend, 26 year old, died in his sleep right next to me on May 14th, 2000. I had woken up that morning because he was snoring loud. I tried to wake him up because it was too loud for me to go back to sleep. He wouldn't wake up after several tries, so I gave up because I knew he always had trouble going back to sleep once woken up in the morning. I went back to sleep and woke up an hour later. I knew the minute I saw him that he was gone. The ambulance came soon after but it was too late. How I wish I knew that the loud snoring I heard was his last few breaths. I'm not claiming that I know how you feel. I know that I don't in the same way that nobody knows how I feel.


Hi my name is Sara, 17, and I have been on here several times reading everything that has been included.  I shed tears everytime I read it.  I think everyday of losing someone close to me and how I would not be able to handle the situation.  You both are so lucky to have had each other and spent so much time together.  My mom and I aren't that close but after reading this made me realize how short life really is.  I think everyone should know about this, it is told so well and seemed like it was so great to have someone like her.  I have a friend named Charity Mae and that is how we found this website by just typing in her name.  She reminds me so much of your Charity.   She is the dearest person and is sweet to everyone. 

This is the first time I have ever heard of this disease.  I have truly enjoyed reading everything about Charity's life.  It seems so wonderful to have had someone so special and gifted.  By reading this story it makes me want to be a better person toward everyone because you never know how short life is.  Thank you for helping me realize that Charity.

Sincerely Yours,
      Sara

Dear Judy,
What a beautiful web site and tribute to your daughter. I am so sorry for your loss. I can't even begin to imagine what you are feeling. I found your web site while doing a search for information on cardiomyopathy. I am a 34 year-old mother of three who was recently diagnosed with cardiomyopathy. Mine is a post partum condition that was detected 10 days after the birth of my son. What a shock this has been. I spent 3 days in Cardiac ICU and 2 days in progressive CCU. The doctors told us how rare this condition is. In my search I am having a difficult time finding specific information on post-partum cardiomyopathy. I know a lot of the information does apply to me at this point. I will be on medications for the rest of my life as well as a cardiac diet and restricted life style. My question for you is, have you ever run across this in all your research? Again, I must commend you for a wonderful site. I would love to see a site like this dedicated to post-partum cardiomyopathy as well.
God Bless,
Roxanne

Hello Judy, my name is Mindy and I was a very good friend of Charity when she lived in Moorhead. There isn't a day that goes by that I do not think of Charity and the many lives she touched. She had so much life left to give. There was also many days that I would sit and contemplate about why this would happen to her of all people, but I finally got over it and realized that God wanted her to come home. I do not know if you remember me or not, but I was at the prayer service, funeral and the burial. Every time that I come back onto this site I cry. I hope you and your family are doing better as the time goes by even though you will never forget Charity.

Judy:
Thank you for your informative web site about cardiomyopathy. My husband died of idiopathic dilated cardiomyopathy last May. He was 43. Sudden death was his first symptom. I would like to do fund raising for cardiomyopathy research, and I plan to organize motorcycle events (similar to the "Love Ride" in Los Angeles) for this purpose. I would appreciate any information you can pass along regarding setting up a charitable foundation, and any information in general.

I happened to find this site by accident but I have been one of the privileged few to read it. I never knew Charity Mae but now she and all of the family will be in my prayers. Thank you for opening your hearts to strangers and touching the lives of others. My heart is with you.
Lindsey

Hi Judy,
I am so very sorry. I have never lost anyone close to me but I can only imagine the emptiness you feel. This site is wonderful and I cried all the way through. You see my husband was told during a check-up in ‘99 that he has idiopathic cardiomyopathy our regular doctor acted as if medicine would take care of it and that our two children needed to be tested as well. They were 5 and 11 at the time and they were both negative. What a relief ! Then after researching I found they could develop it later in life and sometimes it doesn’t show up until after puberty. Am I correct? I live with this everyday. They are both active in sports and the doctors say keep letting them play until if or when they were diagnosed. My mother and father in-laws are negative and both sister in-laws so we don’t know of anyone in the family who has this disease.

Thank you for your web site and the information it provides. I have been told I have cardiomyopathy. I was in the hospital 21 May 01, with chest and arm pain. This is when I found out. My grandmother had this condition. I found your web site while researching the problem. I read on one site that only 50% live 5 yrs once heart failure is diagnosed. I did have heart failure. This is very scary as I had plans for the future and a family. Now I do not know which way to turn. I am still weak on this day, 10 Jul 01. It seems that I cannot get my strength back. I have not told the wife yet of the outcome of the disease and the progression. I really don't know how. Thanks for the information and inspirational story. I got more information from you than my doctors have given me thus far. I am a 38 yr old male.
Cherokee Cowboy Austin, TX

I like that you wrote the lyrics to "Fly Away", by Poe. That is my favorite song in the entire world. It is sooo pretty. I only heard half of it, but it sounds beautiful. It would be cool if you had a link that let people listen to it. Laterzzzzzzzzzz.

Hello Judy,
First of all let me say how truly sorry I am about your daughter. I have a son Ryan 12 and just found out he has dilated cardiomyopathy. He started complaining when he was 10 about rapid heartbeat, so I took him to Hopkins to have him checked out. They said it was SVT. I went for a second opinion and they found his heart to be enlarged to 4.9. The second yr. it was 5.2. I panicked and went back to Hopkins to a great doctor that I felt I could trust Ryan’s life to and he checked him out. He said to bring him back this year in June2001. He went in and his heart has enlarged to 5.7 and the constriction has dropped 3 points. The doctor put him on diuretics and blood pressure meds and wants to see him in 6 months now. I’m running scared to be frank. I don't know anyone else who has went through this. I just happened to find your web site and believe me I cried for you and your daughter. I just wish to God in heaven there was something to help people who are suffering with this. Ryan also has mitral valve prolapse.

Judy,
As I have been researching your family history the internet has been a godsend. I knew that your daughter had died, but couldn't remember the cause. As I was searching the net I came upon your beautiful tribute. I spent most of Sunday PM reading from it. Every page, every comment!! This is a wonderful way to celebrate someone’s life.
Dan

Ms.Kubalak,
I just happened to be searching for help or answers to help me write a eulogy for a friend who died in a tragic accident. I came across your memorial to your daughter. I can tell that your faith in God has kept you going over the years. You never know what to say when someone you love very much is taken. May God keep you in his blessings. Someone once told me that every time God calls one of his children home he places a star in the heavens to shine down on those they leave behind. If that is true, pick out the brightest star tonight and that will be Charity smiling down from heaven.
God Bless
Gary

Dear Judy,
I found your website while looking for information on cardiomyopathy. What a beautiful tribute to such a special young woman! I was diagnosed with peri-partum cardiomyopathy in Sep.00, a month after my first child was born. My EF was 10-15% when diagnosed, and it had risen to 53% by April 3, 2001. I know myself and my family were devastated with the diagnosis. I can only hope that I can have the courage to keep on living and filling every day with love as Charity did. My heart and love go out to you and your family.
Caroline
P.S. If my child had been a girl, her name would have been Summer!

Judy my husband was diagnosed with idiopathic cardiomyopathy in July of this year. His EF at admittance to the ER was 15%. He also has severe mitral and tricuspid insufficiency. Now almost 2 months later instead of being 3+ severe, both valves have improved to 1-2+, but what concerns me is that his left ventricle is still significantly enlarged. The doctor has stated that in 3 months time if there is no improvement or his condition deteriorates, then he will perform a cardiac cath and possibly place him on a transplant list. I'm scared to say the least. My husband is 46 and has been a landscaper almost his entire life and also a construction worker. He has always been physically active and now he can't do anything physical except take short walks, then he is tired and needs to rest. It's tough to see him like this and with all those meds that make him dizzy and sometimes in what appears to be a stupor (beta-blocker) is depressing to him. It's ironic that his nephew had a heart transplant when he was 15 for the same condition that the doctors say my husband has. I've done a lot of reading on cardiomyopathy and this could possibly run in families. How do we find out for sure? I am so sorry about your loss, but your website has really touched my life. If you know of anywhere I might get more information on cardiomyopthy in families, please write back and keep us in your prayers. We see the cardiologist again the middle of September. I tell my husband at least 3 times a day that I love him and give him as many hugs as possible. Diana

Hello, my name is Frank and I have cardiomyopathy. At 36 I had a pacemaker and defibrillator put in. I also have had 4 ablations and over 12 cardioversions. My mother has it also and had a stroke that left her in a wheelchair not being able to walk again. My brother has it also and is in flutter with clots around his heart. We wait for a cure. The doctors say in 2 years they may be able to get to the bottom of this.

Hi Judy,
I was deeply touched by your daughter's web site. She is so beautiful and I say is because she is alive in heaven. We too have lost our daughter. Her web site is http://pages.prodigy.net/raknerud please visit.
Jennifer

Dearest Judy,
My family was in Fargo this weekend and saw the pictures of Charity in the Sunday paper. My daughters and I were in awe at just how very beautiful your daughter was. We are so sorry for all you have gone through. But wish to thank you for sharing your story of your beautiful daughter. My daughters are 17, 16 & 15. Your story helped us realize how short and precious life is. I know your beautiful daughter is still with you. She was an angel on earth in life and in death. God bless you and your family. We are praying for you.
Connie

Dear Judy,
My own 17 year old daughter was diagnosed with cardiomyopathy last May 2001. My mother died from this disease 10 years ago. I was told it was not genetic, but my daughter is experiencing the same symptoms my mother did. She is on digoxin and a blood pressure medication to prolong her life. I am so sad reading about your beautiful Charity and realize I will probably have the same awful experience in my future. I have been looking for some support groups for my daughter and I.. Most of the patients are old people who have already had a stroke. Did you find any support groups for younger patients? My sweet daughter is still in the denial stages of lose. We have visited counselors to no avail. She believes she has been misdiagnosed. Of course the more she finds out about this condition, the more she fights the outcome. She wears a medic alert bracelet, but hides it with a huge watch covering it! She looks a lot like your Charity did, with the gorgeous brown hair and angelic face. She was also a cheerleader in high school! I just keep wondering why God wants to take her away from me! Will you please write back with comments. Thank you very much.

My dad died a few days ago of a heart attack - part of his condition was cardiomyopathy. I must say that I have found your website so calming and healing and I have read most of it. Charity Mae sounded like a special person and the bond that you both shared will live on forever. Clearly she had a loving & caring mom who gave her all the right tools to help her deal with her condition and to enable her to get the best out of life. I was so encouraged to read of her standing up for the "fat" boy in school - she had integrity and obviously a joy for life and for all the good things in it. I also think it is wonderful that Charity Mae met and got to know Summer before she died - I am sure Summer will benefit from that in the future. I wish you and your family all the best in the future.
Angela

Hi. We live in Wausau, WI and my ll yr old daughter was diagnosed with idiopathic dilated cardiomyopathy 10 months ago. She is on aggressive drug therapy and attends school part time still but is resuming some physical activity at her own pace ( ballet, and roller skating.) She still has a lot of arrhythmias and her ejection fraction is 45%. Her heart is enlarged. She still is fatigued a lot and easily. I have been so scared. Do you have any advice? We have taken her to Minneapolis and Marshfield for treatment. Initially, she was in intensive care for 10 days, but her follow up appointments are every 3 months now and sound like your description: echos, holters, stress tests etc. Her physicians haven't given me a lot of information as to what to expect in the future and the prognosis of children with cardiomyopathies because it is so rare. They presume she had a viral myocarditis that caused this, but never confirmed it.

Judy,
It's been a long time since I had communication with you and your family. I apologize for that. Please know that it is not because I have forgotten, know that I think and speak of Charity often and not once have I ever spoken her name or envisioned her without Charity bringing a smile to my face and ease to my mind. I knew Charity from early in Moorhead and lived many important and influential years with her near by. Her style and grace greatly shaped my character into the person I am today. Even four years later I find myself thinking of her, her smile and the impact her presence had on my life. She'll always hold a special portion of my heart of which no one could ever replace. Now that I am older I can't help but realize how lucky I was to have someone so special, so unique and so loving in my life. The days I feel that life has done me wrong I honestly step back and find that we were given the most beautiful gift possible of which far too many people will never have the opportunity to know such love. I hope this finds you well and I wish you and your family nothing but the best.
Sincerely,
Cullin

My great sympathy to you in your loss so overwhelming.

Dear Judy:
I was reading the Fargo Forum this morning and came across your memorial for Charity. I visited the website you have in memory of Charity. Within minutes, I had tears in my eyes. I have read through the entire website and will be checking it often. What a wonderful mother you are. Charity would be so proud of you. God Bless You! Sincerely, Kim

We lost a dear daughter also very suddenly and tragically, but this was due to a drunk driver who hit my daughter as she was going back to her dormitory. She was only 21 years old and a nursing student at University of St. Thomas and College of St. Catherine’s in St. Paul. Jennifer gave generously her heart, kidneys, pancreas and liver so others could go on living the life she so enjoyed. We know the sorrow, pain and anguish of losing someone so beautiful and so full of life. Our thoughts.
Don and Judy

Judy,
I read your poem for Charity, in the Forum tonight, I was so moved by her angel face, I had to go & find out more about her so I went to the Website, I read the whole entire site & I felt her there with me. I have two boys 7 & 4, you have truly woke me up to what it is all about, it is about loving your kids every minute & making the most of everyday we are on this earth. I have not experienced losing a child but my mother did as my brother died when he was 18, I was pretty young & didn't understand the pain she was feeling but I remember the loneliness. People avoided us, I think not knowing what to say to comfort our pain. Mom & I talk as if he died yesterday she has so many memories , that & her faith keep her going as it was 26 years ago. God Bless you for sharing Charity & touching so many lives you are truly an inspiration to me as a mother & I will not ever let a day go by without hugging & kissing my boys. I am going to pray for you & Charity tonight.
Sue

Dear Judy,
I was looking up articles about dilated cardiomyopathy and I came across your website. My son Matt became ill suddenly on Feb 4, 1999 and was transferred immediately to Stanford University Hospital in Palo Alto, Ca. He was diagnosed with idiopathic dilated cardiomyopathy. He was 16 years old. For 3 and a half weeks they tried to stabilize him but he just got progressively worse. On March 1 they told us he had less than 48 hours to live and needed an LVAD to stay alive . He had surgery on March 2. It was heartbreaking to see such a strong and vibrant young man suffer so much. However , he was very blessed because just 5 weeks later he got a heart transplant on April 6, 1999. He is now 19 years old and is doing very well. He was a great football player and had many colleges interested in him. He lost that dream but he is alive. He now works for Southwest Airlines. I cried when I read Charity Mae's story. I will never forget all the children I saw suffer when Matt was in the PICU.

Hi Judy,
You did such a wonderful job at telling the people about the heart and how it all works and the disease etc. It must have been such a shock for you to so suddenly lose your daughter since she was still able to go to school, cheer lead, and function etc. My dear sweet husband (who I married when he was 22 years old) has had very severe health problems and weakness ever since the young age of just 12. He has very little strength, and used to always have weak spells where he would suddenly involuntarily collapse onto the floor, and sometimes pass out. We tried to get medical help for many years, but because he was so young, the doctors never dreamed that he could be having heart problems, and often told him it was all in his head. Can you imagine that? How frustrating and how hurtful. Anyway, my husband Garry, was able to work a job (although he had a great deal of sick days, and always had to use up his vacation days for sick time) until he was 31. At that time he became completely and totally bedridden. Well, I certainly thank God that my husband lived through all that and that he is alive today, but Garry suffers every single minute of every single day, except for when he's asleep. Sometimes he wishes he weren't alive, and could just go be with God in heaven where there are no more tears and no more pain, but I guess God has a purpose for him being here. But every single day is filled with grief and pain. When I come home and see him hurting so much in so much physical pain as well as emotional pain and depression, it's extremely difficult to deal with, because I have to watch him suffer so much all the time every day. He can do very little (if anything at times). He's doing really well just to go out to eat once in a while like on our anniversaries or birthdays sometimes. There have been many times when we couldn't go out to eat on our anniversary or other times because he was just too sick and too weak. Both of our daughters fell into depression and got drugs from other teens at school. I certainly feel for you and the fact that you lost your daughter, but I also am happy for you in that your daughter was able to still go to school and participate in things and be a cheer leader and so on, and that while she was here with you, she was able to enjoy herself and her relationship with you. Yes, it's sad that God took her home so soon, but it's wonderful that He let her be active and do things while she was here. Always remember to thank Him for that, just as I thank Him for allowing my husband to stay with me down here, even though he can't do hardly anything and he suffers greatly every day. Thanks.
Sandy

Judy,
As my friend, Maggie, was looking on the internet to find some poems she came across your daughter's website. We spent a lot of time looking through everything. I think that it is so great to see all of those things that her friends and family wrote about her. She sounds like she was a great girl. You must feel very blessed and proud to be her mother. After reading all of this, I think that God has a plan for Charity. He needed Charity in a better place to help other people. I can't even imagine the pain that you are feeling and the suffering that Charity's friends and family have gone through. I have so much respect for you and your daughter. I really wish there was some way I could reach out and help you through everything that you have and are going through. If I could I would do anything to help. I am just here to offer my sympathy to you and your family. I am sure that Charity looks down upon you and Summer each and everyday and is very proud of the both of you as you are of her.
With love and sympathy,
Tasha

Dear Judy,
I'm actually visiting your site for a school project, and when I searched "eulogy" this sight was the first one I saw. My friend, Tasha, and I spent about 2 hours in our school computer lab reading about Charity and all the wonderful things people had to say about her. I obviously don't know her or anything like that but I'm sure she would have been worth knowing. She seems to have led a fun life and she lived it to the fullest... or the most she could with in her16 years. I'm 16 years old, and I'm from Sauk Centre, Minnesota. I have never had anyone close to me die before so the only thing I could keep thinking was what if one of my close 16 year old friends had died? I can't imagine all the pain I would go through. I want to tell you that after reading and learning some things about Charity, I will think about her from time to time. She was very gorgeous! That was one of the first things I noticed. Summer is very cute too and they both have very nice names! Anyhow, I better get started with my project.
With Deepest Sympathy,
Maggie

 

 

 

 

 

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