Gino was diagnosed with 1p36 deletion syndrome at 8 weeks old. That came with many medical complications one being drug resistant epilepsy.
Gg has had seizures since 2 weeks old and we have never regained control. He has tried numerous pharmaceutical drugs over the past 4 years, the ketogenic diet, 2 rounds of steroid injections and has a vns fitted.
Still nothing has even slightly helped. As of Friday 1st of July we have started our new journey using a uk private prescription for medical cannabis. We have researched and spoke with families in similar situations which gave us great support.
It’s a relentless and hard road but we are parents who just want another option to try and ease this horrible condition for our boy. Keeping hopeful and positive.