Joey
- 2013
- England
- VPS4a
Our Joey is a fantastic boy who through all his challenges has a smile on his face. Joey has such severe epilepsy he can’t walk, sit unaided or communicate verbally. He is peg fed and has a VNS, which is a pacemaker for the brain to manage his seizures. He has a life-threatening condition and has a genetic condition that is called VPS4a. Only about 10 other children have it in the world so there is no new therapy that can help and we symptom manage through epilepsy and movement disorder medicine and a vagal nerve stimulator which is like a pacemaker for the brain which manages complex medicine resistant seizures.
He has started to babble lots and laughs a huge amount since he has had numerous operations to manage his condition. Joey became poorly at around 9 months old and prior to his he wasn’t hitting his milestones. Joey had a horrific seizure that nearly took his life and just a few weeks later he had the same thing happened again where he was close to losing his life This meant that Joey was going to be in and out of hospital until he was 3 and it was only then that the VNS started to help manage his seizures. He loves playing the drums and hanging around with his dad.