easton's story

Easton is a beautiful blue eyed, red-headed four year old boy. He has had quite the journey in his short life. He started his life on a ventilator in the NICU with heart and lung issues. When his parents brought him home, they thought the worst was over. But he continued to have struggles, and ultimately, after seeing many specialists, he was only ten months old when he was diagnosed with a terminal metabolic disease called MPS II or Hunter Syndrome. Easton is missing an important enzyme used to help break down waste. When the waste builds in the body, it causes severe damage to every organ system including the brain. At only four years old, he has had multiple airway surgeries, has a g tube for nutrition, has had multiple hospitalizations due to a weak immune system, and has a port a cath used to replenish his body with the missing enzyme over a 4-5 hour infusion every week. While Easton has endured much more pain and suffering than any child should have to, the one thing that brings him joy is Mickey Mouse and Disney World. 

Also see the AJC article link below.