CDKL5 Spotlight on Bennett!

Meet 2-year-old Bennett! He lives with his mom, Kara, dad, and 4-year-old brother, Parker, in California.

Bennett’s noticeable Tonic Seizures started at 7 ½ months old, although he may have been having Infantile Spasms long before that. Once his seizures started, we got genetic testing done and he was diagnosed with CDKL5 Deficiency Disorder at 11 months old. It was a relief to have an answer, but the news took some time to accept and adjust to.

Bennett has been in physical, occupational, vision, and early intervention therapies for the past year. Over the summer, he participated in group swimming lessons and loved the water! We are hoping to start speech therapy soon and one day try hippotherapy. At home, Bennett has a special chair to help support him and a special needs swing that he enjoys.

Since his diagnosis, Bennett has improved beyond our expectations.

Now we know his potential has no limit and there will always be hope. Our sweet boy is a beautiful light in our lives and has taught us to appreciate every moment we have together. He puts a smile on our faces with everything he does.

You can follow Bennett’s journey on his personal Facebook page: Bennett’s Wish