An 8-year-old girl with early dementia starts a new experimental treatment to prevent her blindness

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Amelie Carroll’s parents have already watched their son go blind, and now they’ve helped raise £ 50,000 to fund a pioneering new treatment to prevent their daughter from suffering the same aggravation.

Amelia had already watched her brother Ollie go blind because of their condition

An eight-year-old girl who watched her older brother go blind while suffering from the same genetic disease she has is on new experimental treatment to save her sight from the same fate.

8-year-old Amelia Carroll has Batten’s disease, often referred to as “childhood”. dementia‘due to its degenerative symptoms, which include vision loss, epileptic seizures, loss of mobility, speech and ability to swallow.

A schoolgirl from Poynton, Cheshire, is the second child in her family to be diagnosed, after her older brother Ollie, 11, who has already lost his sight.

now parents Lucy and Mike are praying for a new £ 200,000 trial at Great Ormond Street Hospital, which they helped fund to help Amelia maintain her sight.

“We’re just praying it works,” Lucy’s mom said.







Amelia became one of the first 50 children in the UK to be tried
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image:

Julian Hamilton / Daily Mirror)

She added she said BBC North West: “We watched our son Ollie go blind, and now the same thing is starting to happen to Amelia.”

Last year, the family began raising £ 50,000 to help fund a pioneering enzyme treatment that takes Brineura, a drug used to slow the disease, and injects it directly into the eye to prevent vision loss.

Their contribution to the £ 200,000 trial, funded by the Battens Disease Family Members Association (BDFA), enabled Amelia and other children to receive treatment not currently available at NHS.

Now Amelia is one of the first two children to start a trial that began in July – but it will be another year before they can determine if it worked.







The girl was already well on her way to losing her sight – as her parents estimated that she would go blind by October last year.
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image:

PA)

Prior to the trial, Lucy told the MEN that it was a match with time to save Amelia’s vision, which was already deteriorating.

She said: “It’s not just her vision – it’s going to have a big impact on her quality of life.

“I don’t think you can put a price on that, and Amelia alone won’t benefit from the new treatment.”

The mother of five has three more children who fortunately did not have a diagnosis of Batten disease.







Ollie had already been robbed of his ability to see, walk and speak
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image:

Julian Hamilton / Daily Mirror)

But Lucy described the sadness as she watched Ollie lose the ability to walk, talk and see.

“As a parent, you can’t describe it other than horrible,” she added.

“It’s awful to think he can’t see his mom and dad or his siblings.

“His world is dark now and nothing is helping him.

“That’s why this last pressure is so important for Amelia.”







Amelia and Ollie were diagnosed in 2015
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image:

Julian Hamilton / Daily Mirror)

The trial will help around 50 children in the UK and will run for 18 months.

Professor Paul Gissen of GOSH said: “If successful, we hope that our work can pave the way for resolving the vision of more children with this disease in order to maintain their quality of life for as long as possible.”

Amelia’s father Mike Carroll said the “amazing” nurses and doctors treating his daughter were “amazing”.

Ms Carroll also thanked well-wishers around the world for their support, adding: “It warms the heart and takes us through the dark times.”

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