Our beautiful baby boy, Sean Declan, was born in July 2017 after a completely healthy and uneventful pregnancy. We left the hospital after 24 hours because our three-year-old daughter missed us and wanted to see her new little brother, and home we went.

We noticed around 3-4 months old that Declan lacked the head control that most babies have at that age and from that point on a journey ensued to understand his delays that has changed our lives forever.

After much testing and also a normal MRI we decided to go ahead with full exome genetic testing. On an otherwise uneventful September afternoon, we got the call from the genetics team saying that they had identified the gene responsible for Declan’s delays and that my husband and I didn’t carry it. The day of Declan’s diagnosis was the culmination of many sleepless nights and countless hours of worry. We were told he may not walk, he most likely will not talk and he will have an intellectual disability.

In our despair, we connected with parents on a group Facebook page and saw that the original dire literature was most definitely not accurate for all. Many of the children were obtaining major milestones and learning, albeit at a slower pace than their neurotypical peers. Regardless, we saw that the potential was there.

Declan is so much more than a diagnosis. He works incredibly hard for each and every inch stone and milestone he achieves. He is now four years old and goes to our local developmental pre-school. He is thriving and an extremely active member of our family and community. He doesn’t stop talking and his vocabulary and sentences are expanding beyond our wildest dreams. He runs around with his walker and started taking independent steps. He is an amazing little brother and the best big brother to our newest addition, Elizabeth. He sings to her constantly and does everything in his power to make her laugh. We have yet to meet a more determined or loving little boy. He means the absolute world to our family and we could never imagine our lives without him in it.

Even though his achievements have exceeded all expectations, the challenges he faces daily bring my husband and I to our knees, and as a result, we are determined to provide him with a life of love, joy and opportunity just like we have for our daughter. This is why we have helped form this incredible charity to start treatment research that will help our Declan and other beautiful children like him live their best lives.

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