Myles’s Fundraiser – GRIN1: DONATE
Myles was born a happy, healthy baby in August 2020. He was perfect. Growing and hitting milestones on time. A week before Myles turned 3 months old, he had his first seizure, and they kept coming. After our first hospital stay, due to a seizure, we thought this was a one-time thing. The more family members and friends we talked to, the more we realized a lot of babies have seizures they grow out of. So, we thought ok this is weird, but Myles will grow out of these. It’s just a fluke. But every time we got one seizure type under control a new seizure type started and back into the hospital we went. After the third or fourth medication change and countless hospital stays for EEGs, I remember one of the doctors saying to us that because the seizure types keep changing when we introduce new medication that this is more likely a genetic condition.
The hospital had collected a blood panel for epilepsy the first night we were there and when we got those results back, we would get some answers. We were very hopeful the bloodwork would give us the answers we were looking for. The seizures were taking a toll on Myles and us.
A month and 4 days after Myles first seizure we got the news Myles had an extremely rare genetic condition known as GRIN1. The doctor really had no information about the condition other than one piece of literature and to add to the rarity the variant Myles had was unique only to him, it had never been recorded in literature before and still hasn’t besides Myles.
We spent most of Winter 2020/2021 in and out of the hospital between EEGs and meeting with all kinds of specialists. It was an absolute world wind. Thankfully Myles is the happiest kid you will ever meet and rarely complains.
Fast forward to August 2025 and Myles is 5 years old and going into his 3rd year of full time school! Myles is lucky to attend a nearby special needs school where he gets regular physical therapy, occupational therapy, speech therapy and vision therapy weekly. He absolutely LOVES to be at school and we are told regularly he is the class clown and always being silly.
Myles still suffers from frequent seizures which we are working on getting under control, low muscle tone (hypotonia), cortical vision impairment, developmental delay, chronic GI issues, is nonverbal and non ambulatory. Despite all his obstacles Myles is able to sit on his own and eat orally which are great accomplishments. This fall Myles even made forward crawl motion for the very first time! Myles loves to be with friends and family. He loves to eat, don’t let his small size fool you he eats like a teenage boy. He also enjoys bright and colorful lights, riding around in his jeep, all kinds of music and spinning in his jumper. We can’t wait to see what the future holds for Myles!
