Levi is an energetic, curious and friendly 11 year old recently diagnosed with GRIA1. He loves monster trucks, stuffed animals, Seattle’s lightrail, water parks, trampolines, baking and especially his big sister Julia.

At birth we discovered he had low oral motor skills – but he met other developmental milestones, slept great, and was walking by 15 months. Before he was two, we started speech therapy to help him with his sounds and words – and hoped being able to communicate easier may help with his challenging behaviors. By the age of three we added occupational therapy for his fine motor skills and at four he was given a basic genetic test that came back “normal”.  Around kindergarten he was diagnosed with ADHD and we tried various medications that quickly escalated behavior and caused sleep disturbances. 

His language became much clearer and he worked hard to keep up in conversations and rephrase when folks didn’t understand him. He was a busy guy – who had poor impulse control – but we really didn’t have many other answers for the next several years. We moved him into a specialized school program, provided him with behavior therapists, received a social anxiety diagnosis & intellectual disability diagnosis…. but still didn’t really have anything that made it all make sense. 

In Summer 2024 after he was denied an ASD diagnosis – we pursued a full exome sequencing genetic test. Just after his 11th birthday we found out that Levi has GRIA1. Although there isn’t much known about it or treatments available – every “symptom” fit our kiddo so perfectly. There was a sense of relief knowing why our sweet boy has had to work so hard to learn, make friends, and control his anger and frustration. He is one of the most resilient, hilarious, sensitive kids I have ever met. We are beyond proud that he is our son & only hope that through this diagnosis we can provide him with the support and tools he’ll need to become more independent and live a full loving life.