HOPE FOR DEANNA! HOPE, LOVE, CURE CDKL5!
Organized by: Ryan Carroll
Deanna has Cyclin-Dependant Kinase-Like 5 (CDKL5). A kinase is a protein that "energizes" other proteins into action. In doing so, it can also "regulate" cell function. CDKL5 - Cyclin-dependent kinase-like 5 is an enzyme that acts like a kinase. This is a rare genetic condition that leads to almost impossible to control epileptic seizures that started when she was five months old. She is unable to speak, has poor eye contact, cerebral palsy, and requires a feeding tube to eat. She also has muscle weakness and marked developmental delays. She is four but is confined to a wheelchair with limited function of her hands. Medical insurance does not cover a lot of the basic needs for Deanna's care. These needs range from a wheelchair, a safe bed to sleep, therapy equipment, and even a van to transport Deanna to her therapy appointments. The van became a necessity after accidently ripping her feeding tube out while transferring her from wheel chair to car seat and back. Now, she is in desperate need of a safe place to sleep and a Specialty Trike for physical therapy.