Ryan was born with DC Dyskeratosis Congenita and HH Hoyeraal-Hreindarsson, even though we were unaware till age 14 when he was diagnosed. When he was 21/22 years old, he was diagnosed as having CP Cerebral Palsy, sad to say we wished it was just CP and not DC. He had a bone marrow transplant at Boston Children’s Hospital with Dr. Sunset Agarwal in 2014. In 2018 we were informed Ryan would need a liver transplant, after a few false hopes and the time it was taking he now needed a double transplant, now lungs and liver to extend his life span. Being as rare as these compound transplants are and the low success rate and possible complications, we were faced with some of the most difficult family decisions of our lives. The life long side effects also made it hard to see a real quality of life for Ryan going forward. Unfortunately, Ryan went on oxygen 24/7 and started his decline in health so on April 14, 2022, his fight ended and passed away from an infection he got. Ryan fought a warrior’s fight but his body was done fighting.

One day Ryan made the noblest of noble and selfless decisions of his life. Ryan had mentioned he thought he should have a bigger purpose in life and wanted to give something back to help change the world for others. His last wish was to donate his body to the research on DC. In his own words “so he can help other kids like him and their families”. He hoped one day no one would have to face the struggles he himself faced with his family along his side. Most importantly Ryan had a bright light about him, and he carried it with him through his thirty years of life. Through everything Ryan has been through he has always been a trooper and never complained. He enjoyed playing his video games and designing rooms in the virtual world. Ryan was very into the “world” and loved having deep conversations with people. He loved late nights with his older brother and parents jamming to guitar hero. He would never pass up a game or going out with his brother and sister and friends to the pool hall. Ryan also attending Camp Sunshine and met other people just like him. Ryan loved going to camp when DC has their sessions. Camp Sunshine was a highlight for him.