A team from Kingham Hill School will be lacing up their running shoes on Sunday 11th May, to take on the Bidwells Oxford 10K in support of the MAP Nemaline Fund at Muscular Dystrophy UK. This year’s chosen charity holds special significance for the school, as it honours Meriel, a pupil who lives with a rare form of the muscle condition, Nemaline Myopathy.
Houseparent and Head of Wellbeing, Mr Tim Martin, highlighted the importance of the cause, stating: “Meriel is the most remarkable young lady who we have the privilege of having as part of our school community. We all use our muscles to walk, to run, to breathe—but for some, the muscles are weak, meaning overtime, with the growth of the skeletal frame, everyday tasks become even more challenging.”
Nemaline Myopathy is one of the congenital myopathies in which changes in the muscle cells make them less able to contract. This weakness of the muscles means that Meriel and children like her are reliant on support from others.
As we begin 2025, Meriel, who also has chronic scoliosis, needs full support in her daily life. She cannot support her own weight and uses a molded chair for stability. Machines assist Meriel’s breathing 24/7, help her cough when she’s unwell, and provide nourishment through a gastrostomy tube.
“Although it has been extremely tough for Meriel in so many ways, her wicked sense of humour and zest for learning and life, shines brightly and brings such joy to all around her” commented Mr Martin.
Meriel’s family, along with the Kingham Hill community, hope that by raising awareness of this little known muscle condition, it will be possible to directly fund research that can make that uphill battle for children diagnosed with nemaline myopathy in future generations, a little easier.
In the past decade, significant strides have been made in the understanding and discovery of the various genes that cause the condition. Gene therapy as a whole is still in a very formative state and research in the years ahead will be vital to take this to new levels.
The family are delighted that their support so far has enabled three research projects to begin, including one on improving diagnosis and one looking at slowing down muscle atrophy.
Kingham Hill School has chosen Muscular Dystrophy UK as its ‘Charity of the Year,’ ensuring that all fundraising activities this year will support this crucial cause. Pupils, parents, and staff runners will be joined by Meriel’s friends and family, all running to make a difference.
Mr Martin urged the school community to rally behind the effort: “Please share this far and wide with all your friends and family. It would be great to smash the target set.”
For those wishing to support the team’s fundraising efforts, donations can be made via https://www.justgiving.com/page/kinghamhill.
Donate to Kingham’s 10K Challenge
Find out more about Muscular Dystrophy UK
