On going medical needs due to CDKL5

CDKL5 ‌
Deanna has CDKL5.  It is a very rare non-inherited genetic mutation. It causes nearly impossible  to control seizures, cerebral palsy, feeding difficulties, muscle weakness and global developmental delay. She is five but is confined to a wheelchair, has a feeding tube, has limited function of her hands, and cannot talk. Our insurance is declining coverage for basic needs. We were initially declined for a wheel chair because it was "a convience item" and didn't treat cerebral palsy! I also had to pay for our wheel chair van. Apparently ripping her feeding tube out while transferring her from wheel chair to car seat and back isn't sufficient enough medical necessity. And now she is in desperate need of a safe place to sleep. And once again insurance is not cooperating. She also needs a Specialty Trike for physical therapy. It's important, but our first priority is a safer sleeping situation for her with the Sleep Safe Bed. We have applied for Medicaid but are still waiting. She will still need work done to the house to accommodate her needs as she grows. Any help you could provide would be amazing and greatly appreciated.