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Sammy has Duchenne Muscular Dystrophy an incurable genetic progressive muscle wasting condition mostly affecting boys. Most people with Duchenne are not likely to see their 30th birthday.
Sammy sadly lost his mobility in Nov 2018, so he now uses a power chair, but he is not bitter and says it has been a blessing as means less falls or potential fractures.
With long term Steroid treatment being the only suitable treatment, though this may help with pro-longing the person’s life and help with mobility it does weaken their bones.
Learning to live with this condition has been nothing short of a rollercoaster. With the support from the MDUK charity, other families in the Duchenne community, family and friends and healthcare professionals and his school, we have been able to ensure that Sammy gets all the support, house adaptations and equipment he deserves and needs up to date.
Over the years we have been passionate fundraisers for MDUK to help raise awareness and funds for treatments for muscle wasting conditions. And in 2014 both Tricia and Oliver (co-founders) created “Bake a Difference” a nationwide campaign, of which we as a family are hugely involved with.
Learning to live with this condition has been nothing short of a rollercoaster.
With the support from the MDUK charity, other families in the Duchenne community, family and friends and healthcare professionals and his school, we have been able to ensure that Sammy gets all the support, house adaptations and equipment he deserves and needs up to date.
Net fundraising from Super Sammy's fund will be split 80% for research into Duchenne muscular dystrophy and 20% for Sammy's future welfare needs.
Click here to visit Sammy's Just Giving page.
