Innes, Charlene And Gino
Gino was diagnosed with 1p36 deletion syndrome at 8 weeks old. That came with many medical complications one being drug resistant epilepsy.
Gino 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.
Cannabis gives us another option when all else has failed.
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.
