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A Stoke mum has expressed her desire to give her son the best life possible - despite him suffering from a rare form of dementia that affects children.
Reggie Griffiths has Sanfilippo syndrome - also known as childhood dementia - an illness that affects just one in 70,000 kids.
However, his mum Rebecca is determined to be there for her son, despite the condition causing significant problems to his memory, and the knowledge that he will eventually 'shut down'.
"People ask me all the time how I cope and I just get on with things," she told the Stoke Sentinel. "It's called a childhood illness as this condition means they don't live past 20. Reggie's brain is very damaged and so it may be shorter than that."
"Me crying or falling apart won't help him, I want to make the most of him while he's with me."
Reggie's condition became noticeable when he was 18 months old and he began rocking back and forth on the sofa.
"He had been very slow developing and had taken a long time to learn how to sit up on his own and crawl and walk," said Rebecca, 25.
"When he would rock back and forth on the sofa I just knew something was wrong."
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She took him to the hospital and they diagnosed him with Mucopolysaccharide (MPS), of which Sanfilippo syndrome is a form. MPS is caused by a shortage of an enzyme that leads to an excess of toxic sugar in the brain, causing a degeneration in mental capacity that has been likened to dementia.
"It is also characterised by how they look. Children who have it will often have a broad nose and a big forehead and so she thought that's what he may have," said Rebecca.
"There are three stages, and he is in the second one where he is hyperactive, non-verbal and doesn't sleep and his behaviour can be hard to deal with.
"The third stage is deterioration and that's when you know they don't have long left. The body shuts down and then he will forget everything he has learned. When people ask me to explain it, the best way is it's like dementia in a child."
"I don't think he will ever learn to talk. He is a very happy child though and is just lovely but I don't think I'll ever hear the sound of his voice."
Rebecca is holding a charity event to raise money for the MPS Society, which fundraises for children with the disease, that will feature entertainment and a raffle.
"The MPS Society supports families who are affected and it's such a cruel illness," added Rebecca.
"When I read up about the condition I read words like 'incurable' and I know they won't find a cure for Reggie but I hope one day they will and someone will be able to say 'my child used to have that'."
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