Make life better for Ellis

Hi, my name is Laura and I am the proud mummy to 2 amazing boys. My youngest Ellis, who is almost 3, was diagnosed with a very complex form of epilepsy when he was just 3 weeks old. He has always defied all odds and has done remarkably well to overcome obstacles. He has learnt to do things that we were told he never would. For instance, crawling, saying some words, feeding himself. His epilepsy has mostly been well controlled with medication however on 20/10/23 he was admitted to Sheffield children's hospital with ongoing seizures. Despite the amazing specialists best efforts Ellis' condition has progressed so much that his epilepsy has become resistant to medications. On bad days he is having upto 60 seizures which absolutely wipes him out for days then another brutal cluster comes along. He is now fed through an NG tube as he has lost the ability to swallow, my boy absolutely adored his food before. He is being transferred to Great Ormond Street where he will undergo surgery to disconnect the right side of his brain. We have been warned that with Ellis' brain abnormality also being on the left side that he may never get complete seizure freedom. After surgery he will need intense rehabilitation with Physio's and OT's, SALT and dietitians . I would like to get private physio sessions for him in order for him to regain some movement to his left side in the hope that one day he may crawl again or maybe even possibly walk. He will require around the clock care and supervision. For peace of mind on a night time he will need a seizure sensor mat for his bed which the NHS cannot provide and like all special needs equipment this comes at a massive cost. All our lives will change dramatically once Ellis is discharged from hospital. However as his mummy I need to embrace the new version of my special boy and give him the best quality of life possible. Any help would be massively appreciated.

Thank you for reading a chapter of Ellis' story ❤️