Minutes after his birth we found ourselves on our way to Children's Hospital in Boston. There he was diagnosed with Hypo Plastic Left Heart Syndrome. This is a form of congenital heart disease where the left ventricle does not develop. Over the years he has had 3 open heart surgeries and many more corrective procedures. Coley also has Protein Losing Enteropathy which is a direct result from one of his surgeries.
PLE is a very complex disorder where edema and a compromised immune system complicated very serious issues for him from a cardiac standpoint. It is very aggressive and painful. It is now time to move ahead with plans for the heart transplant. Along with the edema, he suffers daily with debilitating cramping and discomfort though you would never know it by looking at him because he is always willing to help people around him with a smile on his face and not complain about his health issues. He takes life day by day and always keeps in mind that everyone has a story. You never know what is going on in people’s lives. He just likes to help.
The doctors at Children's Hospital have done as much as they can without the intervention of a national leading specialist in PLE. Coleman has been receiving treatment at Children's Hospital in Pennsylvania with Dr. Jack Rychik. Unfortunately, we were not able to do this alone and in conjunction with our health care coverage. He has recently begun the approval process to be placed on the heart transplant list through Boston Childrens Hospital. This process can take up to two years. In the mean time while waiting there are amny appointments and medicines needed to maintain Coley's health. It is very expensive.
Coley wakes up every day and accepts new challenges that come his way. He is a volunteer at our local hospital, Milford Regional Medical Center, and volunteers at our local church. He has a great sense of humor, loves hanging out with his friends, family, and is now learning to play the drums. He's a great kid with lots of dreams. It is our job as a family to make sure that he receives the best care possible to help him deal with all these medical issues.
He has 2 brothers and 3 sisters and an extended family who have been incredibly supportive. Now, we need your support as well to help us his care as his condition is considered terminal. We are hoping you will find it in your heart to help Coleman to ensure his many tomorrows to achieve his dreams.