3/19/2004 - 10/01/2016
Johnathan was my first born. He was born premature and not breathing. Because of his traumatic birth, his brain endured an injury that caused a variety of disorders. One the many we would later discover was Lennox-Gastaut Syndrome.
His journey began with infantile spasms which in the early stages was left undiagnosed as his doctors said it was just a startle reflex. I pushed for answers and recorded several sessions. I researched what I could online for answers. I returned to his doctors and showed the video, asking if it was infantile spasms. They concurred. He was treated with steroid injections twice a day for 6 weeks at home. Once treatment was over, I saw him smile for the first time at 9 months old.
The doctors continued him on an anti-seizure medication “just as a precaution”. His seizures continued. Over the years following it was a dance of doctors’ appointments, new medications, medication increases, procedures including a feeding tube. They just continued to get worse. On February 5, 2014, after requesting a second opinion from a pediatric epliptologist at a Level 4 epilepsy center, we received the Lennox-Gastuat Syndrome diagnosis. He was almost 10 years old at this point. Previously from his neurologist we were just told he had “childhood epilepsy”.
For the two and a half years following diagnosis we continued the medication and procedure dance. We had a vagus nerve stimulator placed as recommended. We tried the keto diet as recommended. We even tried CBD oil as recommended. His seizures continued and worsened. He passed away in his sleep at the age of 12 years 6 months and 12 days old from SUDEP.
He was my biggest boy ever. He had the greatest laugh I have ever heard. It was the little things that tickled him: the sound of a crushed water bottle, shaking gift wrap, the wind blowing on him. He was such a bright light in my life, and I miss him beyond measure.