The family of a little Portadown girl living with Rett Syndrome are rallying the community to help fund vital research – with two major fundraising challenges taking place within weeks of each other.
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.
Determined to fight back, Mollie’s family and friends launched ‘Mollie’s Miles’, a campaign where they will run and cycle on her behalf.
Related: Portadown couple hopeful of cure for daughter with rare disease
This week August 21–23, family friend Mark Jameson is taking on the Tour De Norn Iron, a three-day, 230-mile cycle covering routes from Portadown to Kilkeel, Newcastle, Portstewart and back.
Then, on September 7, Mollie’s mum Claire, alongside friends Nadine, Brooke and Catriona, will run the Great North Run in Newcastle upon Tyne.
“So much has been stolen from her already, but there is still all to fight for. A cure is within reach,” said Claire.
The family’s fundraising supports Reverse Rett, a UK charity driving forward pioneering gene therapy trials. Two clinical trials are already underway, giving families like Mollie’s fresh hope that treatments could soon transform lives.
Mark and Claire – who also have a younger daughter, Lily – have previously led major fundraising efforts, including the Jurassic Coast 100km Ultra Challenge, which raised £40,000. Local businesses have also backed the campaign.
“Mollie is a happy, determined child who loves her family, her friends and her pony,” said dad Mark. “We will never accept this condition as her future. It’s not a question of if there will be a cure, but when – and every mile brings us closer.”
Donations to support Mollie’s Miles can be made here.
