My Child Has Alzheimers

This week you'll find the heartbreaking story of lovely Joshua in Woman's Own. Joshua's mum, Jodie, explains how Joshua was diagnosed shortly after birth with a condition called Niemann-Pick, otherwise known as Children's Alzheimer's. Joshua is seven years old now and is beginning to show the first signs of dementia. 

He's a little champ though and determined to enjoy his childhood. Jodie knows how rare his condition is and hopes telling her story will help other sufferers to know they are not alone. She's putting her fee towards further research into the condition in the hopes that a cure is found in Joshua's lifetime.

You can read more of Jodie's story here...

Jodie is capturing every moment of Joshua’s life, because soon, ‘Children’s Alzheimer’s’ will take over and he’ll become as frail and forgetful as an old man, not even recognising his mum...

Jodie, 27, explains:

The first time Joshua said ‘Mummy’, I was so happy. Maybe even more happy than other mums, because I knew one day, my boy wouldn’t be able to say Mummy anymore, nor know that I was his.

Every one of his achievements is as agonising as it is celebratory because my sweet, happy seven year old is suffering from Children’s Alzheimer's.

Joshua was diagnosed with the genetic disease Niemann Pick C when he was eight months old.

He had slightly yellow eyes, but he seemed so healthy. But tests showed no liver disease. Baffled doctors asked if there was any family history of serious illness or infant death.

My cousin's daughter had died at three months old the previous year. The baby had suffered from a very rare genetic condition called Niemann-Pick C - a form of dementia known as Children's Alzheimer's.

I told the specialist, who wanted to test Joshua, just to rule it out.

She assured me she’d never heard of two babies in one family suffer from the condition.

A week later, the tests came back and unfortunately Joshua had Neimann-Pick C.

I learned that Niemann-Pick C is caused when both parents carry a faulty gene. It affects just one in 150,000 babies and causes harmful build-ups of fatty substances known as lipids in the liver, spleen, bone marrow and brain.

Children like Joshua, who had an enlarged liver and spleen, usually pass away by the age of five from liver failure.

"Prepare yourselves for the worst,” the doctor said.

The condition is known as Children's Alzheimer's because it causes progressive senile dementia, like the type seen in elderly people.

They warned us dementia would set in around his fifth birthday, that he’d gradually forget every word he had learned.

A few years after that, he’d be too senile to know who he was.

But it wasn’t until six months ago that Joshua started to show signs. Those first few years, I just buried my head in the sand and told myself it was never going to happen.

Then the school said he was struggling with things he used to excel at - things like simple maths. The problem was that Joshua would forget the sum as he was working it out.

At Christmas we were writing his letter to Santa and he couldn’t remember the words for the toys he’d wanted. He gets so understandably frustrated when words fail him.

It’s his immediate memory that lets him down - he can still remember who we all are, he just can’t remember what he did a minute ago, or what he wants to say.

They call it ‘working memory loss’ and it’s the first step in a downward spiral.

He’s also started to fall out of his seat when he’s just sitting still - his muscles and core are beginning to fail him.

Doctors tell us now he’s started to show signs, it’ll be five years at best. In that time, he’ll lose the ability to walk, talk and swallow.

Joshua’s dad, Callum, and I had another baby, Poppy, 18 months ago. Poppy doesn’t have the same condition. She’s been great for Joshua, he adores her. But seeing her reach her milestones, we’re all the more aware of Joshua’s limitations.

Joshua's condition is untreatable.

His condition is invisible - I look at him and can’t believe what the future holds. But I can’t pretend it’s not happening anymore, like I did when he was a baby.

I video him all the time and then I watch the tapes back so I can savour every moment and enjoy every new little thing he does, time and time again. Because after Joshua loses his memory entirely, memories will be all we’ll have.