Wiltshire parents of a baby with rare Muenke syndrome to abseil for charity
A Westbury couple are planning on abseiling to raise funds for the craniofacial charity Headlines, which has supported their daughter with a rare condition.
Aida Willow Murden-Beaty was diagnosed with unicoronal craniosynostosis and now Muenke syndrome, a condition which impacts skull development and affects one in 30,000 newborns.
Her parents, Rebecca Meddick and Jack Murden-Beaty, have been supported by Headlines ever since Aida’s diagnosis and the pair now intend to raise funds for the charity which relies solely on donations.
Depending on the Covid restrictions at the time, the parents from Wiltshire hope to take part in a sponsored abseil of the London Orbit on April 10.
Rebecca said: "They’ve helped us a lot by chatting to us about the operation and putting us in touch with other families.
"I wrote to them asking for ideas on how I could raise money. I was going to do a funday in the summer but because of lockdown we haven’t been able to do anything like that.
"They wrote back and said they were abseiling in April and there were a few spaces left with families going through the same thing.
Aida is due to have surgery this year to re-shape her head, but the recent diagnosis of Muenke syndrome ensures she will need to have her hearing checked every six months.
Rebecca said: "Once she has her surgery this year it’s not over.
"The surgery will correct her head but Meunke leads to deafness, she may lose her sight and it comes with learning difficulties and behavioural issues."
Rebecca and Jack have raised just under half of their £600 target for the charity Headlines through their JustGiving campaign which can be accessed here.
Credit: Matthew McLaughlin, The Local Democracy Reporting Service
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