When Blake was 8 months old, doctors found Grey Matter Heterotopia—a neurological condition in which grey matter clusters in the wrong part of the brain. Grey matter in the brain processes information and controls many functions in the brain including movement, sensation and memory which can affect normal development and function.
After Blake was born, he started to get symptoms which began as small jerking movements as a baby, leading to a prolonged 16-minute seizure at just six months old. He was initially thought to have generalised epilepsy with myoclonic seizures.
Over the months, his seizures increased in frequency, eventually progressing into infantile spasms. As his spasms intensified, he was diagnosed with Developmental and Epileptic Encephalopathy (DEE), a severe form of epilepsy characterised by difficult to control seizures. His rare brain malformation contributes to Blake’s drug-resistant epilepsy. Blake also has a diagnosis of global development delay and is non-verbal and non-mobile.
Blake’s Consultant, Dr Karuvattil said “As Blake’s epilepsy is drug-resistant his treatment plan has involved extensive trial and error to find ways to manage his symptoms. This has included changing his diet to ketogenic diet and supplements, and medication, aiming to ease his seizures and enhance his quality of life.”
Blake has been an inpatient at Alder Hey since January 2023 as he also developed apnoea seizures where he stopped breathing during a seizure, which required high-dependency care.
Since Blake’s arrival, he has been seeing Sam from small things dance collective, regularly. This dance project, led by our Arts for Health programme, encourages child-led dance and play. Sam is a dancer and tailors each session to Blake’s mood and interests encouraging movement and/or relaxation through stimulation and play. He particularly loves bubbles and music.
Blake’s mum Amy Said “Over time, Blake has become more and more engaged with the sessions, showing more and new smiles and giggles and curiosity. As Blake is non-communicative, the sessions have helped me distinguish his likes and dislikes.
Being in hospital for the past 13 months has had it’s challenges, at the moment Blake is experiencing several seizures a day but he is such a resilient little boy, I’m so proud of him. His Consultant, Dr Karuvatill has known Blake since infancy and he has the biggest heart. He will fight for your child as you fight for your child and is an incredible support. Blake has a big brother who adores him, they’re best friends. And we hope we can get his seizures under control and get home to him as soon as we can.”