Family determined to raise awareness of genetic condition Fragile X complete sponsored walk
The parents of a child born with a genetic condition which causes learning disabilities have completed a sponsored walk to help raise awareness.
Claire Seery and Dean Welch organised the event, which saw them and family members set off from Oakham and walk around Rutland Water’s Hambleton Peninsula.
Their son Dominic, who is two and a half, was recently diagnosed with Fragile X – the most common inherited cause of learning disability, and the leading genetic cause of autism.
Its effects are variable, but individuals commonly experience communication issues, severe anxiety, and epilepsy.
Claire said most people she talks to have never heard of Fragile X, so she is keen to raise awareness and to raise vital funds for The Fragile X Society UK, which has been supporting the family.
She said: “Dominic had always been quite delayed in his progress. It took him a long time to learn how to sit up and he didn’t walk until he was two. He’s still fairly non-verbal now.
“We took him to the doctor to get some advice and, after various appointments with paediatric neurologists, blood tests confirmed he has Fragile X.
“When I was first told the diagnosis I was in shock. I’d never heard of Fragile X. But doctors explained it was a common cause of inherited learning disabilities.”
Dominic currently attends The Parks School in Oakham – a special state school for pupils aged two to five – and also Scallywags Day Nursery.
He undergoes regular physiotherapy, speech and language therapy.
The sponsored walk was organised to coincide with the #fragileXpedition which will see the Fragile X community unite to collectively walk, skip, cycle, run, hop, dance, cycle, swim or jump 8,026 miles – the distance around the UK.
Approximately 175,000 people in the UK are affected by Fragile X and its associated conditions – but families often find themselves tirelessly explaining the condition to those around them – even health professionals.
Proceeds raised via sponsorship will help The Fragile X Society continue leading the fight for people living with Fragile X to get the support and recognition they deserve.
Claire, 32, works as a production planner for RPC Containers in Oakham and has been well-supported with sponsorship by colleagues. Dean, 41, a former HGV driver is now a full-time carer for Dominic and the couple’s five and a half month old daughter Stephanie. They were joined for the walk by Claire’s sister Donna Slater and her husband David, who live in Manchester, and Dominic’s grandfather Keith Seery.
The walk has so far raised more than £600. To donate, visit https://fragilexpedition.everydayhero.com/uk/Dominic
Claire and close friend Tracey Stimson, who has been assisting with fundraising, are also planning a sponsored six-mile walk along the Oakham bypass.