Johnathan never retained a word beyond “mama” and “hey dada”. Although he couldn’t speak, if you listened close with your heart you could understand what he wanted or needed. He was an attention seeker. Freely displaying his pitiful lip for all to see and expertly demonstrating the puppy dog eyes. If you called him a faker, he’d grin his goofy little grin.

The last three years of his life were difficult and full of setbacks and hospitalizations. Although food was his second love (surpassed by his love for mama), he lost the ability to eat in 2014. Johnathan was a preemie who by all rights shouldn’t have survived, but we got to keep him for twelve and a half years. He fought epilepsy the majority of his life. He began with Infantile Spasms at the age of roughly six months old. This developed into unspecified childhood epilepsy that we battled, sometimes not so bravely, for his entire life. In 2014 he was finally given a specific diagnosis of Lennox-Gastaut Syndrome, a rare form of epilepsy that is both medication and treatment resistant. It stood true to its word.

Fortunately, earlier this year the Lennox-Gastaut Syndrome Foundation chose him as the recipient of their yearly wish trip to Give Kids the World Village in Orlando where he spent six days and five nights in a villa in a closed community where everything was accessible to him. He got to ride a carousel that accommodated his wheelchair. He got to fly with the butterflies. He even got to ride a train. He got the chance to visit Epcot, Disney’s Magic Kingdom, Animal Kingdom, Hollywood Studios, Universal Studios, Islands of Adventure, LegoLand, and SeaWorld. He was tired easily, but he enjoyed his time there. He had a star placed at Give Kids the World Village in the Castle of Miracles Star Tower. He even got to celebrate Halloween and Christmas while there.

We thank you for loving our baby.