Meet Bennett.

When Bennett was just 11 months old, he was diagnosed with a rare genetic disease called Cyclin-Dependent Kinase-Like 5 (CDKL5). CDKL5 is a unique genetic disease that affects Bennett's functions in his body due to missing a protein vital to his neurodevelopment. He is unable to walk, talk, or use his hands, and he has partial vision impairment, GI issues, and scoliosis. The biggest way it affects his life is that he has almost daily seizures. On days when Bennett's seizures are bad, he is sleepy and unable to participate in his therapies and daily activities.

Coastal Kids was introduced to Bennett two years ago when he joined our Palliative Care program. Since then, Bennett has received shift nursing five days a week, music and massage therapy twice a month, and monthly follow-ups with his social worker. Nurse Clarence has cared for Bennett for over a year and within that year Clarence has become Bennett’s best friend. Bennett’s mom, Kara, says “Clarence and Bennett are best friends. Clarence is so helpful. I can’t imagine having to go to doctor appointments alone with Bennett and his medical equipment.” Bennett, now seven, loves Disney movies, being in his brothers' company, and playing with musical toys.

“Coastal Kids Home Care has been a huge gift for us over the past couple of years. We have Clarence now, who is not only Bennet’s nurse and caregiver but his best friend. Clarence reads and plays with him [Bennett]. He goes with us to all his appointments and makes sure he is safe in the car. Before we had CKHC I honestly was afraid to take him anywhere alone. “

- Bennett’s Mom