Roarsome Rory’s Raisers was set up by Mum Kerry for her son Rory. Rory was diagnosed with Becker muscular dystrophy in August 2020 and since then Kerry has thrown herself into fundraising and becoming one of MDUK’s Family Funds was the obvious next step.
Roarsome Rory’s Raisers
Kerry, a child-minder, described the shock when following over a year’s tests and delays the family were finally told, at Alder Hay Hospital, what the symptoms Rory had shown meant.
From when Rory was 18 months old and until he was three, I constantly sought answers for the weakness I could see in his development. Several clinicians said he was fine and one even told me I was being neurotic. But I have professional knowledge about children and with Rory’s older brother Thomas I was aware of what normal development looks like.
We were only allowed one person into the hospital for the diagnosis and I had to relay the news to my husband in the car park. This added to the difficulty.
However, as part of the diagnosis the Paediatrician told me to go the the MDUK website and that was a life-saver. We had just three weeks to prepare his school, who had not previously had a child with muscular dystrophy, for Rory’s arrival. The MDUK information enabled us to inform them about what to expect. It was brilliant.
Rory was diagnosed with ADHD in 2022 and his neurodiversity creates extra challenges with a muscle wasting condition however Kerry and John use techniques to balance his behaviour allowing him to let out his energy but to slow down when he needs to.
The family have thrown themselves into fundraising for MDUK with John skydiving for MDUK whilst Kerry climbed the equivalent of the Burj Kalhifa. The boys have also joined in and are regulars at supermarket collections.
Net proceeds from this family’s fundraising will be split 80/20 between MDUK’s research and to help support the family with future welfare needs.
