John’s Story

My response was, "Oh it's just a spasm he will be fine."

Hi All, it is such an honor and a privilege to be given the opportunity to share the story of our son John Peter Richards. I am humbled by the incredible work that CURE Epilepsy has done and continues to do for epilepsy research and support. Families need this organization by their side, especially those battling with epilepsy.

John was born on November 19, 2017, with Down Syndrome. The minute he arrived into this world we adored him. He had this beautiful blonde hair with these amazing almond-shaped sky-blue eyes. All of his features were perfect. Typically, children with down syndrome struggle to breastfeed due to low muscle tone or what is known as Hypotonia. However, John came out a natural! His muscle tone developed normally and he was as chubby as could be. In fact, we would say that he looked like a Cherub that was built like a gummy bear.

I remember the moment epilepsy entered our life. It was a beautiful Saturday morning in April of 2018. I had The Beatles on and a huge cup of coffee celebrating the weekend. I happened to be dancing with John in my arms and I held him up in the air to get a big smile out of him when I saw his head thrust forward. I remember saying to my wife, “I think John just had a seizure”. We began to observe him and he seemed totally fine after that and we just went on with the day. I remember thinking, “Maybe I was just too rough with him” or “Maybe he just wasn’t ready for me to lift him like that” or “Maybe he still has low muscle tone in his neck”. All of these thoughts made sense. The idea of epilepsy was so far from my mind that I couldn’t really picture it.

When we entered the month of May in 2018 John didn’t sleep. Ever! He would be up all hours of the night moaning with his hands in his mouth. He presented as if he was about to get every tooth in his mouth all at one time. A week or so went by and we came to the stark realization that there was something wrong. I will never forget the doctor looking at us and saying “He has a form of epilepsy that is called Infantile Spasms”. My response was, “Oh it’s just a spasm he will be fine”. The doctor looked at me with this intense stare and responded “This is very very serious.” In my mind, he was wrong.

The search for a solution began. We started with ACTH, which is a week-long hormone therapy that has an 87% success rate. John failed. From there it all happened very quickly. Over the next 3 years we experienced 4 Ambulance rides; six 4 week+ hospital stays; explored 15 different medications; 3 surgeries; Keto Diet; around the clock nursing care at home (Thank God my wife is a Nurse), which included High-Flow Oxygen, C-pap machine, Pulse Oximeter; and countless weekends spent out of state with specialists. John had lost the ability to eat, becoming 100% tube fed. Epilepsy completely swallowed him. The only way I can describe epilepsy is it is like walking into an ocean for a swim and suddenly being pulled underwater by a rip tide. You may get a few seconds of breath in your struggle but eventually, nature wins. That was John’s experience. He had very short moments of breath and was always pulled deeper.

John passed away in his mother’s loving arms and me by his side on May 16th, 2022. He was the only person that I ever knew that came into this world with a blank slate and left it with a blank slate. John was a greater comforter. I always said he wore his soul on the outside of his body. His sense of touch was that of gods. I recognize that there are many levels of lose and grief. However, our grief has presented us with 2 choices. The first choice is to wear it on our face and separate ourselves from God and life. Or, we can use it as a catalyst to get us closer to god and soar. We choose the second option. I feel very strongly that it would be selfish for us to not share in John’s relief and part of that is sharing his story.

– Peter Richards