Children's Cardiomyopathy Foundation

May 2012

Dear CCF Families and Supporters,

Hi. My name is Joe DiSanto, and I am 17 years old. Until I was 11, I was quite active and played baseball, basketball and football. Then I was diagnosed with dilated cardiomyopathy, and I had to immediately stop sports and start taking heart medication. I was crushed, but I adapted. I really had no choice.

When I was 12, my heart got worse and I went into cardiac arrest. I ended up on a heart machine in a medically induced coma. In less than a year, I had gone from feeling fine and playing sports to being one of the sickest patients at the Children's Hospital of New York. While at the hospital, I suffered five strokes. When I woke up from the coma a month later, I couldn't walk or complete simple tasks like brushing my hair. I also lost my right peripheral vision.

I was lucky enough to receive a heart transplant in time, which saved my life. I still have a few activity restrictions and will probably be on medication for the rest of my life, but I try to stay positive. Now, I am looking forward to going to college in the Fall of 2012.

When I was first diagnosed with cardiomyopathy, my mom found the Children's Cardiomyopathy Foundation (CCF), and they have been there for us ever since. We never felt alone because there was always a link to someone in CCF's supportive community who could help. When I needed a heart transplant, instead of being scared, we had a level of understanding and comfort that we never would have had without CCF.

I am so grateful for my new heart and for CCF's support that I want to give back. I am now a CCF Teen Ambassador counseling other kids with cardiomyopathy. I want to help them understand that having cardiomyopathy is not the end of the world. When life throws you curve balls and you take one on, you realize that life is precious and that you should make the best of it to reach your goals.

I will continue to do all that I can to help kids with cardiomyopathy, and I hope you will too. What CCF is doing for pediatric cardiomyopathy is so important. Please support their efforts by donating to CCF's Spring Appeal. Your gift will fund the research and provide the support that children with cardiomyopathy, like me, need to have a fighting chance.

To make an online donation today, please click here.


Joe DiSanto