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Mum’s joy now brave Matilda is home again

Matilda Moffatt is back at home in Leyland with her mum Melanie

Matilda Moffatt is back at home in Leyland with her mum Melanie

A little girl battling a fatal disease is back home in Leyland after undergoing months of medical trials in London.

Matilda Moffatt, who celebrated her fifth birthday last week, is the first child in the UK to take part in a pioneering medical trial, in the hope of finding a cure for the rare genetic condition, late infantile battens disease.

The brave youngster has been in London since the start of the year with her mum Melanie for the ground-breaking medical trial by a Californian pharmaceutical company called BioMarin.

It involved having a hole drilled through her skull to create a reservoir in her brain, allowing the types of enzymes she is missing to be pumped into her brain.

After being hospitalised during the course of the treatment, she now only has to go back to London once every couple of weeks for the treatment, and is settling back into a routine in Leyland.

She has also returned to school in Chorley, which she only managed to enjoy for four days in September last year, before she began suffering seizures and got her diagnosis.

Mum Melanie said: “She’s enjoying interacting with children and she loves going on the mini bus every day to school.

“She just wants to be out all the time, she’s very outdoorsy.

“She enjoys going on the swings and on her trampoline, but she does need help with that.

“She still can’t walk properly or talk, and she’s just started to go blind.

“It’s such an emotional rollercoatser.

“It’s like a long grieving process, every time I lose a bit more of her.

“I try to keep strong for her though; she keeps me going.

“This trial is my hope at the minute. It seems to be going well, but we will only really know after about a year if it’s working.

“I’m looking at it like, if it doesn’t help Matilda, it will at least help to get one step closer to finding a cure for the disease, or at least postponing it.”

Melanie is now planning a family fun day to raise awareness of the disease, and to raise money for the Batten Disease Family Association, Rock FM’s Cash for Kids, and the Magic of Matilda fund.

‘The Magic of Matilda’ was set up in the toddler’s name to raise funds to send her on a once-in-a-lifetime holiday, and make alterations to her home. So far, almost £10,000 has been raised.

 

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