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 portacath 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.
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.
Here are a few items that we’ve come up with that Easton could use:
-One is a special needs swing and frame
-One is a special needs float with an insert
Easton would benefit from the swing because he loves to be outside and to be moving! He loves to feel the wind in his face. The float would be helpful because it is so hard and expensive to find adaptive floats to hold up his body with his low tone.
He absolutely loves to be in the water.
-Lastly, is a Tumble Forms feeding chair. We currently have one, but it is getting too small and is not ours as it is a rental from a special needs organization. We would love to have our own to be able to transport for Easton to sit in to eat during g tube feeds and eating his baby food since he needs to have a harness and be at a certain angle.
Hope you enjoy our sweet boys beautiful face in these photos!
Gift: Special needs swing and frame, special needs float with insert, and a Tumble Forms feeding chair
Location: Henry County
Given: December 2023
Easton and his family’s gifting was made possible by SGF’s 2023 Giving Tuesday campaign. We set out with a goal of gifting TWO families in our 2023 Giving Tuesday campaign, and thanks to 19 generous donors we raised $2,467.76 of our $3,892 goal. With these funds raised and the remainder being covered by SGF, we officially met our goal. We are so grateful to everyone that shared and contributed to our campaign and helped to make an impact this Giving Tuesday!