My Dear Friends and Fellow Association Members:
I really need your help! I don’t know how many of you are aware that I have a precious special needs
Grandson who is 3 ½ years old and his name is Colton. Since he was 9 months old, he has had many
issues affecting his life. He has a swallow disorder that can cause things to go into his lungs instead of
his tummy. Because of this, he has a feeding tube in his belly. He has had 3 eye surgeries and 1 brain
surgery. He has a movement disorder that can keep him up for hours in the night. Colton has nighttime
meltdowns that can last from 2 to 6 hours. He doesn’t walk or talk but does get around with a bunny
hop/crawl. Colton requires 24 hour care. He has therapy weekly at our home and 1 day a week in North
Canton. I am telling you about Colton because I want you to know him and understand how hard it is
for him to live in the areas we have for him now.
Colton, his Mommy and Daddy plus little brother Easton live in some very cramped quarters. Colton
sleeps in a specially made bed to try and keep him safe with his Daddy sleeping on the floor beside the
bed. When Colton is awake and out of his bed, he has 2 safe areas he can play/be which are about 3×6
each. Therapists and teachers are prohibited to work with Colton due to lack of space. No place in the
house is handicap accessible. My daughter stays home to provide the 24 hour care Colton needs while
his Dad is out working.
We NEED an addition but the cost is out of our reach at this time. Currently, $25,000 has been raised by
amazing family and friends but our needs greatly exceed this. We have had a friend offer to pay for an
architect to draw plans and that is being done.
THIS IS WHERE I NEED YOUR HELP!
We are looking to add: 2 bedrooms and a handicap bathroom upstairs along with a wide staircase that a
handicap seat can be attached to. On the first floor, we need a therapy/classroom and a handicap
bathroom. WE NEED MASONS, CARPENTERS, DRYWALLERS, PLUMBERS, ELECTRICIANS, AND BUILDING
MATERIALS (Cabinets, counters, shelves, toilets, sinks, showers, flooring etc.) We need a contractor
who is willing to oversee the project.
THIS NEEDS TO HAPPEN NOW BECAUSE…
Akron Children’s Hospital has just provided us with a diagnosis for Colton- and it is NOT good! It is called
Pontocerebellar Hypoplasia 2A. The disease is rare and it is fatal. The average life span is about age 7;
HOWEVER, some patients have lived into their 20’s. Miracles happen! THIS IS SO IMPORTANT for
Colton to have a safe place to live for however much time he has left. My family is devastated.
PLEASE, PLEASE, PLEASE if you can help us or know of someone that would be willing to help with any of
the things we need to make this a reality let me know. We invite you to view Colton’s Facebook Story-
“Colton’s Undiagnosed Journey” to learn more about our story! Thank you SO much for taking the time to read this letter!
~ Bambi Huff (Longtime SANEO Member)