A two-year-old boy is believed to be the youngest person in Britain ever to be diagnosed with ALZHEIMER’S.
Little Reggie Griffiths is battling dementia and has tragically been told he may not live past the age of 20.
The tot is thought to be the youngest person in the country to suffer from Sanfilippo syndrome – known as childhood Alzheimer’s.
The rare terminal condition means he will lose his memory as his mind and body deteriorates.
Heartbroken mum Rebecca, 25, was told nobody with the condition lives past 20 but she is determined to give her son the best life she can filled with happy memories.
Full-time mum Rebecca, Knutton, Staffs, said: “He was diagnosed on January 30 this year but he hadn’t been right for some time.
“We took him to Royal Stoke Hospital because he was just rocking back and forth and developing slowly – at first they thought it was autism.
“He was transferred to Birmingham’s Children’s Hospital after a paediatrician at Stoke noticed the symptoms and we were then told he had Sanfilippo syndrome.
“Children who have it will often have a broad nose and a big forehead and so she thought that’s what he may have.
“I Googled it and you heart just breaks when you see the words ‘incurable’ and ‘terminal’.
“I didn’t cope well at first but I’ve got two other children to be a mum for and I want to give Reggie the best life possible.
“He is hyperactive, non-verbal, has sleep apnoea and his behaviour can be hard to deal with but a lot of the time he can be a happy smiley little boy.
“People ask me all the time how I cope and I just get on with things. I always said I wasn’t going to bury my head in the sand and hide.
“It’s called a childhood illness as this condition means they don’t live past 20, so we’re going to create as many happy memories as we can for him.
“Reggie’s brain is very damaged and so it may be shorter than that. His tonsils are big and his airway is very small so they will have to come out at some point.
“He will just slowly deteriorate to the point where he will be wheelchair and bed-ridden and won’t be able to eat. You just deal with each problem step by step.
“I want to make the most of him while he’s with me and give him amazing memories while he can recall them. There’s no point me falling apart.
“His body will eventually shut down and then he will forget everything he has learned.
“I don’t think he will ever learn to talk but he did say the word ‘dad’ once, so we can always hold on to that.
“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 and Reggie’s dad Jake Huckfield, 27, are now holding a fund-raiser to help research into the condition and hope one day a cure can be found
Rebecca, who is also mum to Amelia, six, and Mason, four, added: “I don’t think we’ll see a cure in Reggie’s lifetime.
“But I hope in the future someone will be able to say my child used to have that.
“The MPS Society supports families who are affected and it’s such a cruel illness but also they are seeking a cure.
“It would be of some comfort in the future if we can say we’d contributed towards a cure in any way we can.
“A lot of people try and raise money for treatment abroad and we were told there were clinical trials – but I don’t want to put him through that.
“None of the clinical trials have worked so far and you don’t know he is going to react to them.
“I don’t want him being used as a guinea pig, so we’re just focused on giving him the best life possible while we have him with us and accept what’s to come.”
