Jude was born February 13, 2018. While Jude was born seemingly healthy, within the first few weeks he started having issues with his feeding, which led to his first stay at Seattle Children’s Hospital. Little did we know this would be the first of his many trips to Seattle Children’s. It turns out we would spend the better part of two years trying to piece together Jude’s various symptoms and try to find a reason behind them.
At any given time, Jude was working with 14 different specialists and countless therapy teams to help solve the medical mystery he presented. In early December of 2019 we received a call from Jude’s genetic team, saying they had found a diagnosis- GRIN2D. After nearly two years of frustration, confusion, and heartbreak we finally had a diagnosis that made sense and ticked every box of symptoms our son had. The relief we had was immense, but we knew it was just the beginning of a difficult journey.
Jude struggles with dysphagia, resulting in a feeding tube in order to keep him hydrated and for administering medications. He also started having absence seizures at around 18 months which we are trialing medications to keep these under control. His speech therapy team works hard to find a way to help Jude communicate as he is non-verbal, along with other global delays and autistic traits. He received his gait trainer around his second birthday and has been loving the freedom that comes with walking.
Jude is a very happy boy, who loves his shows (Winnie The Pooh and Puffin Rock are the favorites at the moment), being tickled, and playing outdoors. While Jude has many different daily challenges, he always finds a way to meet them with a smile, and that is truly inspirational. We feel very blessed to be a part of such an awesome GRIN Community and look forward to supporting and finding a cure for GRIN.