|Type of Gift||Fun Items, Therapy Equipment|
|Diagnosis||Hunter Syndrome/MPS ll|
|Gift Requested||Special needs swing and frame, float, and a tumbleform feeding chair|
|Price of Gift||$2,000.00|
Why we requested this gift
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 tumbleform 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.
I was trying to look into some kind of ramp for my van for his wheelchair but I’m not sure what all the possibilities are since he currently sits in a carseat and his wheelchair is in the hatch. My problem is picking up and taking out the wheelchair can get quite heavy and is weighing on my back. I’ve seen some portable ramps but they are just as heavy as his wheelchair.
Just wanted to throw it out there in case your organization has any contacts or has helped another family with this!
Thank you so very much!
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.