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Child Alzheimer’s: Mother’s devastation as son, 8, no longer recognises her at school gate

Alzheimer's: Dr Chris discusses the early signs of condition

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Eight-year-old Stanley Barnes was diagnosed with Sanfilippo – a condition likened to Alzheimer’s. Stanley was first diagnosed with the condition when he was just 16 months and the condition has a life expectancy between 10-20. This condition means the young boy can no longer communicate with his parents or remember everyday words such as “apple”.

Now, his mother, Mari Barnes, 40, has said her son’s cognitive skills are now so limited he often does not recognise her when she picks him up from school.

Ms Barnes, from Falmouth in Cornwall. said: “He’s quite dramatically gone downhill this year – he’s lost all his words.

“It’s really hard, it feels like you’re losing part of him each day.

“This is rapid, just six months ago he might have been able to acknowledge you or say something.

“It’s a bit like childhood Alzheimer’s – that’s the easiest way to describe it to someone.

“He’s just basically losing skills.

“Over the weekend he had a burger, and managed to say the word burger, and honestly I nearly cried.

“We haven’t had that recognition or anything for quite some time.

“It makes it all the more special to know that he is still in there.”

When he was about two, Stanley underwent a two-year trial at Great Ormond Street Hospital.

His mother continued: “It was really quite invasive, they put a gate inside his body that went into his spinal column.

“They then injected that port with the enzyme that he was missing every two weeks, so that was quite full-on.

“We were on that trial for two years which kind of gave us a bit of hope that it would slow down the progression of his disease a bit and give him a better quality of life for longer.

“To an extent I think it has helped Stan, he’s eight now and compared to a lot of others with his condition he’s in relatively good nick.”

Ms Barnes added how she is not trying to teach him new skills but to maintain the ones he has already learned.

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She added: “Having received the news when he was only sixteen months old, that was the point when it was hardest and when I googled everything I could possibly learn about the disease.

“It was horrific, just awful, but at the same time it wasn’t this little boy that we had in front of us. It certainly wasn’t our story yet.”

“The minute I leave the house I have to hold his hand, otherwise he just goes off in a different direction.

“Like with Alzheimer’s, he has some early memories he recognises.

“Like if we walk past the nursery for example he sometimes tries to go in, and he remembers songs we used to sing to him because his face lights up.

“He loved Frozen for example, so if that ever comes on the TV he gets so excited and might stand up and jump and yell around the TV.

“I don’t know how much longer that will last though.”

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