I'm Still Noah

After 2yrs of trying to figure out why Noah was randomly falling and having balance issues in 2014 he was finally diagnosed with Friedreich's Ataxia through genetic testing. We were told it was extremely rare, that only 15,000 people Worldwide have it so they don't know much about it and there is no cure.  Friedreich's Ataxia is an autosomal recessive inherited disease that causes progressive damage to the nervous system. It manifests in initial symptoms of poor coordination such as gait disturbance; it can also lead to scoliosis, heart disease and diabetes, but does not affect cognitive function. Noah's balance has been decreasing a lot the last few months. We had special leg braces made for him in October 2017 hoping it will help to stretch his tendons as his feet are curling and pointing making it even harder for him to walk. That didn't work so we are currently working on getting him an EasyStand Evolve that he must stand in an hour a day. Base model starts at $4,000. They are saying that this is our last hope to keeping him out of a wheelchair longer. As of right now we have been waiting 6 months for it and insurance won't cover the main part of it unless he has tried one out. With his size he was unable to try it. So they are trying to find one for someone who is 6'4 and so far no luck. Last year we moved his bedroom to our family room to make it easier since stairs are becoming an issue. With him being 6'4 and 270lbs at age 17 when he put all his weight on our railings to the stairs they were becoming very wobbly and unsafe for him. Since we have moved him, we were able to get make him his new handicapped accessible bathroom with help of friends, family and donations. Thank you to all for your help. He absolutely loves his bathroom so much that he even made a place for his cat to hide during thunderstorms! (See his Facebook page for pics) There are still a lot more things that need to be done to make this house ready for him. With his size we had to have a special wheelchair made and he has asked if he can start using it in the house because when he walks for more than 10 minutes his feet and legs start hurting him really bad. Problem is it doesn't fit through doorways so he would be stuck in his bedroom. We need ramps put on our front porch and back as well as a railing going to our garage. He needs handicapped rails put on in his new bathroom and with Noah being in our backroom he has no privacy to change clothes and sleep. He wants a wall put up with a bedroom door so when company comes over hes not embarrassed when they see him sleeping in briefs. The team of Dr's who see him every 3-6 months are guessing at his rate he will be in a wheelchair within a yr. Guess we just didn't think he would get to being wheelchair bound so fast. Along with his balance he is insulin resistant, he has ptosis (drooping eyelids) in both eyes, he has Nystagmus (where his eyes bounce back and forth uncontrollably), astigmatism, sleep apnea and severe fatty liver disease not caused by alchohol. Everything has just been overwhelming and costly to make it safe here for Noah with repairs and adjustments. Sean has switched shifts at work to make more money and I'm busting my tail doing art. Every time we think we are gonna start saving something comes up. Just in the last 2 months our basement flooded, air conditioning broke, sump pump broke, lawnmower broke, huge leak in walls in Noah bedroom, dog in vet for xrays from injury, 2 TV's broke... We just can't catch a break to even try to save and feel time is running out. Friends and family have told us to start a Go Fund Me to help with these modifications. So here we are in hopes that we can make all the changes Noah will need to our home. If you would like to help us in donating it would be much appreciated. You can also follow Noah's journey on his I'm Still Noah Facebook page. I will post his progress and changes we have made with your help. Thank you so much from the bottom of our hearts.