Heartbroken Mum Says Her 8-year-old Son No Longer Recognizes Her Due To "Childhood Alzheimer".

Brave schoolboy Stanley Barnes, from Cornwall, was diagnosed with Sanfillipo, a condition likened to Alzheimer's, at the age of 16 months.

The mother-of-three explained her son had gone 'dramatically' down hill in recent months.

Now eight, Stanley is living with Sanfillipo, a condition likened to Alzheimer's, that means he can no longer communicate with his parents or remember everyday words.

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He has since deteriorated to the point where he can now no longer communicate with his parents, Mari, 40, and Ross Barnes, 44, or remember everyday words like 'apple'. 

The mother-of-three explained: ''His first year was relatively normal. Then I saw a big change in him after that. He just stopped hitting those milestones, and we got referred to a paediatrician - so we got a really really early diagnosis"

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''A lot of children don't get diagnosed until school age, people tend to just think the child might be autistic, but then it's bizarre because they'll have the word for 'apple' one day and then not have that word the next day."

"There is a look as well, like with down syndrome. They have shorter limbs, and larger eyebrows, and a blackened nose bridge - it looks quite sweet in a way - but it can get stronger as they get older. It's just a result of the disease."

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Stanley was diagnosed when he was about sixteen months old and the condition has a life-expectancy between 10-20.  

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.

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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 family said when Stanley was about two he underwent a two year trial at Great Ormond Street Hospital. It was really quite invasive, they put a gate inside his body that went into his spinal column.

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"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."

She said: 'His cells are lacking in enzymes that clean out toxins, so as he gets older those toxins get built up - and so everything starts to shut down. He's physically able still, I do see that he's stiffening up though, and he isn't covering as much distance as he once did - but we've got the liveliest dog on the planet to help keep him going walking every day."

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'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.

Marie said this included a challenge of walking ten miles over the space of a week for Children in Need last year. They even appeared on the live show after raising nearly £5k. 

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"I don't know how much longer that will last though."