Asa is a rambunctious 5.5 year old who was diagnosed with GRIA1 in January 2020. When he was 5 months old, we found out that Asa is profoundly deaf which shocked our family because he is the first one to have hearing loss. We immediately got him services he needed to succeed. He started missing milestones, which was normal for children with hearing loss, but then he started missing milestones for walking and development. We were eventually referred to a neurologist who decided it would be best to do genetic testing. When we got the results we found out that he had a chromosomal duplication on his collagen gene, which means he has extra elasticity making it harder for him to walk. He was officially diagnosed with global delays. When he was missing more milestones we went back to the neurologist and geneticist and they did more bloodwork. A few weeks later we finally had our answer, he was the 15th person in the world to be diagnosed with GRIA1.

Even though Asa has three diagnoses, he absolutely does NOT let anything slow him down. He is the most loving kiddo and has been thriving. We have all been navigating this life together and he shows us every single day how strong he is. He is defying the odds of having three diagnoses stacked against him. He has been at a special school since he was 3 and he is going to be graduating kindergarten in May then starting big kid school in August. If you looked up the word resilience in the dictionary, his picture would be right next to it. He loves to laugh, loves to eat, dance, swing on his swingset, play with his older brother, and play with his dog Goose. We absolutely would not trade him for the world and seeing him grow is one of the most beautiful things to witness.

Our Asarrito is an unstoppable force.