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Portadown couple hopeful of cure for daughter with rare disease

'We categorically will never ever accept this for Mollie. We don't believe this is the life she will lead. It's all about focusing on a cure and raising as much money as possible to make it happen sooner rather than later'

Mollie Walls

A Portadown couple whose daughter was born with a rare, neurological condition say that despite many challenges they are full of hope for her future and that a cure is “within reach”.

Mark Walls and wife Claire were delighted in June 2020 when Mollie, their first child, was born.

However, they started to become concerned at around nine months when she didn’t hit milestones such as crawling or trying to stand.

In December 2021, Mollie received a devastating diagnosis of Rett Syndrome, which affects just one in 12,000 girls and is caused by a random gene mutation.

Although Mollie understands everything that is going on around her, she is effectively ‘trapped’ in her own body and is unable to walk, talk or feed herself.

Since the diagnosis, the couple, who have another daughter, Lily, aged one, have moved from complete disbelief to a determination to raise awareness of the disease and fundraise for Reverse Rett, a UK charity which supports research and whose hashtag is ‘Change is Within Reach’.

Mark has recently completed the Jurassic Coast 100km Ultra Challenge in Dorset for the charity, along with fellow dads and other relatives, with the group raising an impressive £40,000.

The family’s fundraising efforts have been further boosted by an initiative by Bann Hire and Sales, Mollie’s Machines, after owner Shane McCrory heard about Mollie and decided to do something practical to help.

The firm, under the guidance of Portadown depot manager Brendan Byrne, has painted a number of machines pink and is giving all the proceeds from their hire over the summer to Reverse Rett.

Mark and Claire Walls with daughter Mollie along with Brendan Byrne, depot manager, and Shane McCrory, owner of Bann Hire and Sales

Said Mark: “They have been very, very good as has the local community.

“We were absolutely devastated when we got the diagnosis. The first thing you do is Google it. You see there is no cure available , that there is the potential for all these bad things to happen, seizures, pneumonia, children dying at a young age.

“We were completely on the floor to say the least.

“At the start, it was panic stations. We pulled her out of nursery and I came out of work temporarily and Claire and I shared her care.”

Mark says he and his wife “spent the whole of 2022 coming to terms with  the situation and then trying to rebuild and get ourselves strong enough to do what we are doing now”.

Mollie, described by her parents as a “happy child with a “determined” personality, has since returned to the Ark Day Nursery, which she loves and where staff “have been amazing with her”.

“She loves the children in her class, she loves her family and her pony,” he said. “But at times she’ll get upset because she can’t communicate.

“One of the common characteristics is constant hand-wringing so Mollie doesn’t have purposeful use of her hands. She has them clasped together.

“Up until she was nine months, she played with her toys, she fed herself but all those things have slowly been taken away from her to the point where she stopped doing them.”

Mollie on her pony

However, Mark and Claire are thankful that Mollie is so young and that research into a cure is so far advanced.

“Two companies are working on finding a cure at the moment,” he explained. “Clinical trials have started in Canada for gene therapy replacement, another one is due to start in America and there is a trial imminent in the UK.

“It’s very, very positive. A cure is coming – it’s not if but when. We need to do the best thing for Mollie and keep her as healthy as possible and be ready when that day comes.

“We felt we were coping in 2022 but the truth of the matter is we were barely treading water. Now, with everything that’s going on it’s complete positivity.

“We categorically will never ever accept this for Mollie. We don’t believe this is the life she will lead. It’s all about focusing on a cure and raising as much money as possible to make it happen sooner rather than later.”

The machines – a vibrating plate donated by Glendun Plant Sales, Dungannon; a power washer donated by Michael Stewart in Lisburn and a lawnmower donated by Camsaw Distributors – are available from all three depots at Banbridge, Portadown and Lisburn, and can be hired from now until the end of August.

Anyone wishing to donate to the charity directly can do so by clicking Donations | Reverse Rett.

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