Roarsome Rory’s Raisers was set up by Rory’s mum, Kerry. Rory was diagnosed with Becker muscular dystrophy in August 2020 and since then Kerry has thrown herself into fundraising and becoming a Family Funds was the obvious next step.
Roarsome Rory’s Raisers
I’m a child-minder, so I have professional knowledge of children and their development. When Rory was 18 months old, I started noticing a weakness in his development and, I was constantly seeking answers until he was three years old.
Several clinicians told me that Rory was fine, and one even told me I was being neurotic. But I knew my son, and having his older brother Thomas meant I was familiar with what normal development looked like. I knew something wasn’t right and I wasn’t prepared to stop asking questions.
After more than a year of tests, appointments and delays, we were finally given the answer we had been searching for at Alder Hey Hospital. We were told that the symptoms Rory had been showing were signs of muscular dystrophy.
As part of the diagnosis, the paediatrician directed me to the Muscular Dystrophy UK website and it was a lifesaver. We had just three weeks to prepare Rory’s school for his arrival, and they had never had a child with muscular dystrophy before. The information gave us the knowledge and confidence to explain what Rory’s condition meant, what they could expect and how they could support him. It was brilliant.
Rory was also diagnosed with ADHD in 2022, and his neurodiversity brings additional challenges when he is also living with a muscle wasting condition. Rory’s dad and I have developed techniques to help balance his behaviour, giving him opportunities to let out his energy while also helping him recognise when he needs to slow down and rest.
Since Rory’s diagnosis, our family has thrown ourselves into fundraising for Muscular Dystrophy UK. Rory’s dad has done a skydive, while I took on the challenge of climbing the equivalent height of the Burj Khalifa. The boys have got involved too and are now regulars at supermarket collections.
For us, fundraising is about giving something back to an organisation that gave us support and information when we needed it most.
Net proceeds from this family’s fundraising will be split 80% to Muscular Dystrophy UK’s research and 20% to help support the family with future welfare needs.
