My little hero…Gage. Despite what he has been through, he is a happy, sweet, easy going little boy. Gage has been diagnosed with a rare genetic disorder called Carnitine-acylcarnitine translocase deficiency (CACT). When Gage was born there were only 30 documented cases in the world. Most children with CACT do not survive past the toddler years. Gage has defied the odds and will be celebrating his 8th birthday this year.
Gage is non-verbal, developmentally delayed, wheelchair bound, has nephrocalcinosis, cardiomyopathy, at risk for seizures, GJ tube feed, on a bipap with oxygen at night and requires daily medications. He’s had frequent hospitalizations throughout the years and I have come close to losing him many times.
I’m a single Mom of 4 boys, and we are constantly on the go with sporting events, activities & doctor appointments. Gage is growing and currently weighs close to 70 lbs. It is becoming more and more difficult for me to lift him, and getting Gage AND his wheelchair into my vehicle is becoming treacherous to my health. Despite Gage’s handicap, I have always tried to maintain a sense of normalcy for him. I want him to be included in ALL of our family activities. I am 5’ 6 & weigh 125 lbs. I’m in good shape but had an incisional hernia surgery 3 years ago. I believe I might have to get another surgery in the near future but am fearful of going through with it, because I feel that I would just tear it again with the constant lifting of Gage.
Wheelchair accessible vehicles are very expensive. A used reliable van could cost $30, 000 and up and new vans are around $40,000 to $70,000. I recently went through a divorce and wasn’t prepared financially for life as a single parent. Because Gage requires a great deal of constant care, I am currently unable to work.
Please vote for Gage and share to help us win an accessible van!