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, they would help us figure out the correct medication. We were very hopeful the bloodwork would give us the answers we were looking for. The seizures were taking a toll on Myles. He no longer had the head control he once had, he wasn’t tracking objects with his eyes, and he wasn’t as playful as he once was.

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.

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. He didn’t care about going to the appointments and made friends with everyone we met. He quickly became a favorite of the nurses and still to this day have nurses that come to say hi to him when we go in for routine EEGs.

In May 2021 appointments started to slow down for us and we settled into our new “normal.” To all the new families out there starting their journey I never thought things would slow down but they do in time.

Myles is currently enrolled in weekly physical therapy, speech therapy, occupation therapy and vision therapy. Myles is an extremely hard working and determined little boy. He works so hard every week in therapy and wants nothing more than to move and do things on his own. We are so thankful for that. Myles is now almost 2 years old and presents with global developmental delay, hypotonia (low tone), epilepsy and cortical vision impairment. Thanks to therapy Myles can now hold his head up, sit independently on his own when put in the seated position, stand with assistance, babbles, orally eats food and his vision is improving. Although progress is slow Myles is always making progress that makes us, as parents, extremely proud. Myles loves to eat, drink water from his sippy cup, listen and sing to music, jump/spin in his jumper, snuggle and play with all his amazing and supportive family members. We know Myles is going to do great things.