Roarsome Rory’s Raisers was set up by Mum Kerry Bentley 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.

Kerry, a child-minder, described the shock when following over a year’s tests and delays the family were finally told, at Alder Hey 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 another child (Thomas is aged 7) 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 has settled well into school and his big brother is his biggest supporter. He is popular with his classmates and has made lots of friends.

 

In October 2020 we received our first wheelchair. It was heart-breaking and a huge relief all at the same time because it gives Rory more freedom and it also saves our poor backs!

 

Prior to setting up Roarsome Rory’s Raisers, Kerry has already taken part in Step up for MDUK, climbing the equivalent of The Burj Kalifa in Dubai and raised funds through a Facebook Birthday fundraiser.

Kerry and husband John are looking forward to getting involved in more fundraising for MDUK, 80% of the funds will go towards research, with the remaining 20% held in trust for Rory’s future care needs.

 

How you can help

Support Rory by donating on his JustGiving page

 

Muscular Dystrophy UK has been supporting families affected by Becker muscular dystrophy since 1959 funding research to find a treatment for this condition. With your help, we can continue to fund research that could improve the lives of individuals living with Becker muscular dystrophy.

Setting up a family fund, like Roarsome Rory’s Raisers, is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our Family Funds.

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