StemCell Therapy

A HEALTHY 11-year-old girl can no longer string a sentence together after being diagnosed with dementia.

Molly Ingham was diagnosed with a rare form of childhood dementia in May last year after she started to lose her eyesight, memory and mobility.

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The normal outgoing little girl started having seizures when she was just six-years-old.

Batten disease robs children of their speech and sufferers of the disease rarely make it to adulthood.

Mum Adele Ingham, 39, said Molly can become confused because of the condition and now has to use a wheelchair as she no longer has any balance.

She said: "It's been devastating to watch the most outgoing little girl that could do everything every other six-year-old could do go into this situation.

It's soul destroying. It affects short term memory so she won't take in new things.

She started a special school last September and made lots of friends but she can't remember any of their names now.

What is Batten disease?

Batten disease, otherwise known as Neuronal Ceroid Lipofuscinoses, is a fatal disorder that affects the nervous system.

The condition, which typically begins in childhood, can manifest itself in vision problems and seizures.

It can then worsen, with children suffering from cognitive impairment, worsening seizures, and progressive loss of sight and motor skills.

It is often fatal by late teens or early 20s.

According to BDFA UK, an estimated 1 3 children are diagnosed with an infantile form of the disease each year, meaning there are probably between 15 and 30 affected children in the UK.

There are other variations of the genetic disease, with 14 strains so far diagnosed.

There is currently no cure

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The family live in Stalybridge, Greater Manchester and Adele said Molly has started to ask her when she can go home, but she asks the question when they are already home.

She added: There's a lot of confusion.

"My dad died two and a half years ago and she still wants to go in when we drive past his flat.

She used to know every word to every Disney song now she can't even string a sentence together.

"She can't see anymore. I just bought her a new Olaf toy and she didn't know what it was until she felt his carrot nose.

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Molly used to be able to ride scooters, go to the park and use the climbing frames - like any other child, but now things have changed.

"Everything just started becoming more difficult so now she's in a wheelchair because she's got no balance and she'll fall and hurt herself.

I might have only a few years left with her and that's being positive.

Adele said Molly was a perfectly healthy child until she turned six when teachers started to notice her zoning out and she began having seizures.

Soon after Molly was taken to see a paediatrician who suggested ADHD or a low IQ but after a second opinion, she was diagnosed with absence epilepsy until the condition progressed and her seizures became more frequent.

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Adele worries she doesn't have much time left with Molly and is currently waiting to find out if her daughter has been accepted for a treatment trial in the US.

The mum and daughter would have to travel to Dallas to a centre called Taysha Gene Therapy.

The cost would be covered by the company as its a trial but the spaces are limited.

Adele added: "The treatment won't bring her eyesight back but it might help her to say the odd sentence instead of the odd word so there's still hope and a lot of fighting to do but I won't stop."

Read the original:
Our perfectly healthy daughter can no longer string a sentence together after being diagnosed with dementia - The Sun

This entry was posted on September 2, 2020 at 3:53 am and is filed under Eye Sight & Vision. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |