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Getting soaking wet for Matilda’s benefit

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People were drenched for more reasons than one when they supported a Leyland mum’s quest to raise awareness of her daughter’s illness.

The heavens opened over Preston’s Avenham Park as Melanie Moffatt held a family fun day with five-year-old Matilda.

But the weather didn’t deter families from having fun and raising money for a good cause, and most got wet through anyway when they took part in the It’s A Knockout competition.

Matilda suffers from late infantile Battens disease, which means she struggles to walk and talk, and Melanie wants to raise awareness of this and other types of Battens disease.

Matilda is the first child in the UK to take part in the trial, in the hope of finding a cure for the rare genetic condition, late infantile battens disease.

She has spent a large part of the year in London for a 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 in hospital 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.

‘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.

Money from Matilda’s Magical Day last Sunday will go towards the Batten Disease Family Association, Rock FM’s Cash for Kids, and the Magic of Matilda fund.

 

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