Dylan

Dylan was born with his hands and feet turned in. When asked, the midwives advised this was perfectly normal, as Dylan was our first child. We knew no different despite having seen none of our friend’s children with hands and feet like this when they were born. We later understood this was due to Dylan's poor muscle tone, hypermobility and underdeveloped flexors. Dylan had feeding problems, he never took to breast feeding, he just couldn't latch on, he'd have to be rocked/bounced whilst you stood up to encourage bottle feeding. The rocking/bouncing was good sensory feedback to awaken and stimulate his feeding muscles working. He weaned later with gagging and chewing difficulties ongoing due to poor advice from health professionals. Dylan had poor head control until after his first birthday. He sat up after 12 months, but wasn't stable until around 18 months. He commando crawled around 2 years old, took his first steps age 3, but didn't walk confidently until much later and often with a wide gait. He also has communication and learning difficulties.

On his one-year check-up, he was referred to a panel to decide if he should see a paediatrician. Here began the ongoing chasing for support. Dylan needed speech, physio & OT therapy. He had an MRI scan, numerous blood tests and other checks for various conditions through a genetic referral. Dylan was placed under a genetics study in the UK called the DDD study. We googled furiously for an answer, for support and for guidance. Dylan, in the meantime, had a specialist nursery placement, later a specialist school placement.

August 2018, Dylan received a diagnosis and this was a game changer!!!! GRIN1 disorder. We were delighted to find an answer. Further googling led us to understand that many with GRIN1 have seizures. Dylan does not, but it became apparent that Dylan does have visual processing difficulties (CVI), another common GRIN1 trait. Without his diagnosis we would never have understood this. He also has involuntary movements and episodes of manic crying / laughing often unexplained though common among those with GRIN1. The GRIN1s quickly grew into a fantastic community, thanks to the world of social media and head enthusiastic parents connecting us all.

Today, Dylan can walk, run, use a scooter and trike (with support). He goes swimming, dancing and horse riding. He can talk, though his verbal communication is a couple of words at a time. He uses signs and pictures to aid communication and he will always endeavor to make himself understood by others. He is persistent, stubborn & tenacious. Dylan loves people, socializing, animals and he takes delight in small things like a leaf blowing in the wind. Whilst raising, Dylan has at times been a struggle with lots of stresses. It has also been an absolute joy as Dylan is one of the happiest, most endearing, charming, and beautiful people we know.