Aaron’s Story

Aaron was diagnosed with Di Hydropyrimidine Dehydrogenase Deficiency at 5 months old. For ease, lets refer to it as DPD.  It is a genetic, metabolic disorder.  To our knowledge Aaron is currently the oldest example of severe infancy born DPD living at the moment. There are less than 25 cases of it reported world wide…ever.

Aaron’s prognosis was that we would be lucky if he made it to age 3. That is when we started celebrating his birthday annually with family and friends.  As he has become an adult, it is his resilience we wanted to acknowledge and ultimately led us to starting Aaron’s Coffee Corner as his living legacy.  Our family realizes that every day with Aaron is a gift and we want to celebrate him.

Aaron requires 24/7 care. When he is not home with his family, he is with his fabulous nurse at school.

As a result of Aaron’s DPD diagnosis he has got a lot going on.

Aaron has Epilepsy.  He is fed through a G-tube. We also deliver his medicine through the G-tube. Aaron is non-ambulatory - a fancy way of saying he is confined to a wheel chair. He is braced from his neck to his feet because of the tone of his body and has a metal rod in his back to manage his scoliosis. Aaron is non-verbal, this means he cannot communicate. He is legally blind as a result of cortical vision impairment.

Aaron’s hearing is GREAT!  He’s got that going for him, and if you talk or sing or play music for him his smile will light up a room.
As Aaron gets bigger his body gets weaker. When Aaron gets sick things go upside down quickly. Every hospitalization is critical because it is harder and harder for him to recover from illness. His autoimmune system is impaired, his respiratory system is impaired, his musculoskeletal system is impaired, his development is impaired.

Aaron is a medically complicated, fragile young man.

But boy, oh boy, is he handsome!