A 'smiling, happy' teen suffered up to 100 seizures before his death just a week before his birthday.
Ryan Ellis was born with brain damage before being diagnosed with a rare form of epilepsy called Lennox-Gastaut syndrome, causing the teen to suffer as many as 100 epileptic seizures a day. Often the seizures would be "big ones" which would require him to be moved and take days for him to fully recover.
The 18-year-old from Everton, who also suffered from scoliosis and was PEG fed (percutaneous endoscopic gastrostom - a type of feeding tube), was unable to talk or walk in the same way his peers could but he would find a way of communicating with his mum and aunt who were both his full-time carers.
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Joanne Ellis, Ryan's aunt, told the ECHO about how he would always light up a room despite him struggling with pain from the range of health problems he suffered with. Every morning he would greet his mum and aunt by saying "Hi, I'm Ryan". The 45-year-old carer said: "He was always full of love.
"We had his funeral yesterday [Monday, September 26] and his teacher summed him up. He would leave a mark on you. He would always be smiling and happy because he couldn't talk. Even the days he had 80 or 90 seizures a day he would still be smiling.
"He couldn't walk or talk but he would communicate. Every day he would wake up and manage to say 'Hi, I'm Ryan'."
During the emotional tribute Joanne, twin sister to his mum Angela, explained that Ryan's health deteriorated in the last 12 months leading up to his death, with him spending the last days of his life in the comfort of Claire House who made him "comfortable". Joanne said that the death was caused by both respiratory problems and his epilepsy before he died on September 8, 2022.
She added: "Over the last 18 years not one day went past without at least four big seizures a day. He would always have little ones up, up to 100 in a day where he would twitch and shake, but when he got picked up to go to Redbridge [School] he would always call the taxi 'the happy bus'."
Joanne has organised a GoFundMe for both Ryan's family and Claire House, to read more and donate, click here.
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