Simons New Heart

Hello my name is Maria Valletta and my 15 year old son Simon was born with Hypoplastic Left Heart Syndrome. In short HLHS is when you are born with a severely underdeveloped left ventricle of the heart. This syndrome caused him to have multiple open heart surgeries starting at birth. He spent most of his first few years in and out of hospitals and therapy trying to make up for lost development during those times. He was on track and recovering very well after all of that. He was able to get fully caught up, and was beginning to lead a somewhat normal life. He was going to school at St. John Newman’s, hanging out with his friends and two brother’s. He was doing so good that he was even able to participate on the Irondequoit little league baseball team. His brother Josh was the head coach for the two years that he played and they had so much fun!  Everything was going great until 2 years ago when he turned 13 and started to hit puberty. His heart could not keep up with his growing body causing him to grow and develop at a much slower rate than others. Along with his lack of growth due to his weaker heart he has also recently developed Protein Losing Enteropathy or PLE for short. PLE is when your body can not hold and process proteins. This causes him to retain fluids which then leads to extreme swelling in his stomach, legs and ankles. This has made him very self conscious as he is not only smaller than most kids in his grade but he is often very noticeably bloated and swollen in these areas. His condition has gotten so bad that he is now in need of a heart transplant. While some of the hospitals we have met with would not perform the surgery because he is too “high risk” the great doctors at New York-Presbyterian hospital in New York City have agreed to treat Simon! This whole process has been hard on our family. The countless doctor’s appointments, hospital stays & travel have caused me to miss a lot of work. Now that we are moving forward with the heart transplant we will have to relocate to New York City for 6-12 months while we wait for a heart to become available. We are asking anyone for any amount that they can spare to help ease the burden on our family financially while we focus on Simon’s health and keeping him in good spirits during these difficult times. While most of the money raised will go towards helping with  the medical bills we have and are going to incur, the rest of it will go towards helping cover other living expense that would otherwise be hard to come by due to my inability to work while in NYC. Thank you all for reading this, sharing this, and for any and all donations as they are greatly appreciated!!