|Type of Gift||Therapy Equipment|
|Diagnosis||Hunter Syndrome/MPS ll|
|Gift Requested||Adaptive bicycle from Freedom Concepts|
|Price of Gift||$5,000.00|
Why we requested this gift
Easton really enjoys being outside when it’s warm enough and he is a busy body. After Easton outgrew a tricycle that his mom and dad could push, they were devastated to find out the cost of an adaptive tricycle that could give Easton a sense of normalcy and independence but with the required help he needs.
Along with another genetic abnormality, Easton has low muscle tone, kypho-scoliosis, a form of club foot, poor hand function and contractures along with much more which requires him to need a special made bike just for him!
This gift would mean so much to our family and we know with all our heart that Easton would thrive off having an opportunity to be able to ride a bike outside with his family.
Easton is a beautiful blue eyed, red-headed six-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 six years old, he has had multiple airway surgeries, has a g tube for nutrition, has been in multiple therapies since a year old and 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. This treatment unfortunately is not a cure and does not stop the Brain deterioration. Sometimes it can mimic that of Alzheimer’s because these children lose their ability to walk, talk, eat, breathe, etc. over time.
While Easton has endured much more pain and suffering than any child should have to, he is an extremely bright and happy little guy.