Aiden was born perfect and healthy at 40 weeks on 24 September, 2018. I remember hearing the nurses count “10 fingers and 10 toes” and in my head I felt relieved. At 2-5 months, Aiden would cry nonstop for hours a day every day, constant vomiting, and he was also not tracking toys or doing other things that typical babies were doing at his age. That was the start of our tests and many medical trips to Singapore.

April 9, 2019, a day I would always remember. I got an email with the results of the genetics test we took 3 weeks prior. Aiden has a mutation of the GRIN1 gene that was not inherited from any of us and mutated on its own. That day, our world changed completely. We flew to Singapore 2 days later to meet with the geneticist and to this day, I still remember her words so clearly, “You need to prepare yourselves, as Aiden may never walk or talk and he is at high risk for seizures.” Her words were like knife piercing my chest slowly, deeper and deeper. What will happen to my baby? I had never felt pain like I felt that day.

GRIN1 is an extremely rare genetic mutation and currently there are only about 50 in the world. Aiden’s specific location, where the mutation on that gene happened, is his alone. He is literally the only one in the world, which I think is amazing. We knew he was special, but we did not know just how special he was. Doctors don’t know anything about it and most have never even heard of it. The GRIN1 gene is responsible for all of our learning and memory. These two things are crucial for us to be able to do ANYTHING. Learning and memory allows us to talk, sit, walk, crawl, eat, etc. This is all affected. 

Since he was six months old, he has been going to baby school every morning from Tuesday – Saturday, and then physiotherapy in the evenings Monday – Friday. He is a very busy baby! As normal babies get head control around 3 months old, Aiden got it when he was 10 months old. He is still eating only purees and can’t seem to swallow textured foods yet. He has GERD and constipation issues and has been on reflux medication since he was 2 months old.

Aiden amazes me everyday. Despite his unique DNA that tells us all the things he cannot do, Aiden shows us his strength and want to prove the universe and doctors wrong. Although he may never catch up, we will never give up hope and we will keep trying to help him be as independent as he can be. Aiden is a very happy baby who loves kisses, music, sand, water, papaya, peas, his iPad and many more. He is so loved by everyone he meets and his smile is contagious!