Ezra came into the world on September 17th, 2018, surrounded by his parents and family who were all so excited to meet him! The sweetest baby boy with the brightest eyes and smile, he filled our hearts instantly.
In his first year, we started to notice that he was not meeting his milestones. At around 9 months old, he still was not sitting up or babbling so we were referred to start physical therapy services through our school district. At 11 months, he was referred to a neurologist who ordered an MRI. While the MRI came back normal, we still knew something wasn’t right. He then went on for hearing and vision testing which came back normal as well. We waited a few more months and then we were referred for genetics testing. Through whole exome sequencing, our Ezra was diagnosed with a very rare disorder called GRIN1.
Receiving that phone call was the most devastating day. We were told that there is no cure, and it comes with a high risk for seizures, developmental and intellectual delays. We were also told that he may not ever walk or talk. This completely shattered our hearts. As his mother and number one protector, I feel bouts of helplessness that I cannot change this for him. On the other hand, I also feel surges of hope and determination that one day, there may be a cure and in the meantime, I will do everything in my power to help him have the best life. And most importantly, he is always loved fiercely and unconditionally.
Ezra is now 19 months old and still does not sit up, crawl, stand, or walk. He still has not said his first word and does not babble. He only gives us the cutest squeals and screams of excitement and lots of laughs. He truly is the most smiley, happy little baby guy. He very rarely cries and is always content.
Since his diagnosis, we were adding lots of different therapies and appointments with specialists, but because of the current Covid-19 crisis, these have all been put on hold. We are excited to start meeting all of the new faces on Ezra’s Super Team!
Our Ezra Bear is a son, little brother, grandson and nephew. He absolutely loves music, his big brother Zachary, his puppy Jordy, his family, being silly, his Aunty’s homemade pancakes, and his most favorite music show, Little Baby Bum. He loves the wind in his curly hair and riding in his stroller car.
We are incredibly blessed to have such a special little fella in our lives. The future holds great things for him.