Emerson’s Story

Emerson was born 2 weeks early through induced labor in January, 2018. Because he was not growing as expected. His delivery went smooth, without any complications. At 3 months old, Emerson, woke up one morning unable to breathe, eyes rolled back and his body was limp. He was diagnosed with ALTE (Apparent Life Threatening Event) also know as, BRUE (Brief Resolved Unexplained Event). We were told, it happens to babies once, and never again. The following day, he had a Tonic-Clonic seizure, while napping. We rushed him to the ER, but all his tests came back normal, so once again we were sent home. After that, every time he slept, he had a seizure. A friend advised us to record them, to show to the doctors. Once we did that, everything changed. We got a neurologist and he was put on Keppra. But, his seizures continued, and he was hospitalized. During his hospital stay, he had his first MRI. According to the scans, his brain appeared to be small in size. After a week in the hospital, and months of spinal taps and blood work, he was diagnosed with the KCNA2 mutation. At the time he was diagnosed, his doctor explained that Emerson’s mutated differently than any other person’s on record. Unfortunately, they have no answers, we just have to let Emerson give us the answers. Presently, his sezuires have subsided and he’s not on any medications. His most recent MRI, showed his brain has grown to the expected “normal” size. He has apparent developmental delays, but is high functioning. He’s in speech, OT, PT, and currently attends preschool, half day, 4 days a week. Emerson is the sweetest and silliest little boy, with the biggest heart! His favorite things are, playing with kids, and spending time with family, especially his brothers.