Deacon

A Developmental Epileptic Encephalopathy 41 Warrior

When Deacon was 2 days old, he had an unexpected seizure. They flew him to a Children's Hospital, and he had a short stay in the NICU. We left with no answers because all tests and images were normal. When he was 6 weeks old, he was diagnosed with infantile spasms. Because of this, and his seizures shortly after birth, they ran genetic tests. The epilepsy panel came back positive for a genetic mutation in SLC1a2, which is called Developmental Epileptic Encephalopathy 41. There have been fewer than 20 cases reported worldwide. Since it's a de novo genetic mutation, my husband and I aren't carriers of it. It causes drug-resistant epilepsy, cortical visual impairment, feeding difficulties, and low muscle tone.

The first two years were tough. We were in and out of the hospital a lot due to seizures that would last 25 minutes or longer. Deacon is now 3 years old, and he went all of 2024 without a seizure! He does have some visual problems, and he has a feeding tube. We spend most of our days in therapies, and he has 9 specialty doctors. The doctors told us he would never walk, talk, or sit. But Deacon is so close to sitting on his own! We don't let what the doctors said hold him back from reaching those goals!

Available in: Footie, 2-Piece Set, Graphic Tee + Blanket