This is Hugo’s story in the words of his mum, Crystal;
This is our son Hugo-James. He was diagnosed with Infantile Spasms at six months old. When he was three months old I noticed some odd movements so took him to my hospital and was fobbed off. It was only because I kept going back that he was finally referred to a children’s hospital where he was diagnosed and started treatment. Hugo has never responded to the drugs we have tried,or if he does it’s for a maximum of a couple of weeks and then the seizures are back again. We have now been given the option for Hugo to have brain surgery – a hemispherectomy, which will mean the whole left side of his brain needs removing. This will mean that Hugo will lose some visual fields and have a right sided weakness and will need intense physiotherapy. There is a 70-80% of surgery being successful. Scary – but this is Hugo’s only chance of leading a normal life, no seizures, no medication and be able to develop. The decision was a tough one but me and his dad decided that although there are risks involved, we have to try to stop our son having seizures every day. Hugo will face a lot of problems after surgery but we will get him through it as a family and the main thing is my boy will have a chance to be seizure free! We haven’t had a day in the last 14 months that Hugo hasn’t had untold seizures. The only thing I can control throughout all this is that my boy gets what he deserves and that he is happy!! Any families going through similar please feel free to get in touch I’m happy to offer my advice or help. Never feel alone throughout this.
