Hope, Love, and Cure CDKL5 for Deanna!
Organized by: Emma Reynolds
Deanna has CDKL5. It is a rare non-inherited genetic mutation that leads to almost impossible to control seizures, cerebral palsy, feeding difficulties, muscle weakness and global developmental delay. She is four but is confined to a wheelchair, has a feeding tube, limited function of her hands, and cannot talk. Our insurance has been helpful in simple needs, but the more complex needs are met with resistance or downright refusal. 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. It is not a nice van, but it serves our purpose. It was a deep financial blow to our family at $46,000. I personally would qualify for a new wheel chair every 30 thousand miles if I was disabled, but as my child, she does not qualify. Her lack of muscle tone makes transferring her to any seat very difficult. Insurance did not see ripping her feeding tube out while transferring her from wheel chair to car seat as sufficient enough medical necessity. And now she is in desperate need of a safe place to sleep. And once again insurance is not cooperating. Our first priority is a safer sleeping situation for her with the Sleep Safe Bed. Our family will face many more struggles in her lifetime, and fights for the equipment that she will need. Once we move to Florida, we will face having to modify a bathroom, a bedroom and perhaps even having to install a railing system in the house so that we can move her around. She is only 4, but she's already 50 pounds and growing. The oldest known person with her disability is forty one years old. Please help us where you can. We are trying to do the best we can for her. Putting her in some sort of group living, or nursing home is a thought we cannot even fathom.