Son has leighs disease

I'm raising money for my son who is diagnosed with Leigh's disease, It's a rare mitochondrial disorder. He's lost everything : his hearing, being able to move, talk, and use of his neck.  He also has seizures.  He was fine up untill 19 months when he had his first seizure. From there, it progressively got worse.  He is the best kid in the world. I had to stop working to be with him and lost our apartment and move back in with my mother to care for him. In the last year hes had 2 lengthy hospital visits (one for 3 weeks one for a month and one surgery for a feeding tube) Its really hard financially and really hard to transport him. I'm trying to raise money for a handicap accessible van to be able to take him to all his Dr appt's and everything else we have to do. I never thought I'd be at the point to ask for help, but at this point,  there's no other options. Hes the best kid in the world. We are hoping in the spring to get a trial of a new drug that is being tested for his disease. We work with him constantly 24/7 to help him improve. right now hes not able to move any parts of his body purposfully.  He is growing and is getting harder to get him from point A to point B. Being able to get a handicap accessible van would make our life so much easier.