In 2010 Meriel (aged 21 months) was diagnosed with Nemaline myopathy, a very rare muscle condition with no treatment or cure, which changed the lives of her family overnight.
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 totally reliant on support from others in so many ways, from sitting up in bed as the day begins, getting dressed, walking, to the more mechanical support of machines to help her breathe overnight, to cough when she has a cold or a gastrostomy tube for basic nourishment.
It made us aware very quickly and in a very humbling way of how much of our physical lives we take for granted. Meriel faces these day to day challenges head on with a smile, a great twinkle in the eye, a determination and a sense of humour that is extraordinary. So many children like Meriel are faced with an intense uphill battle in life, constant exhaustion of the muscles is a daily fight, with mobility becoming increasingly difficult as the body grows, scoliosis is often inevitable, and the lungs struggling with every infection.”
Her family hope that by raising awareness of this little known muscle condition, it will be possible to directly fund research that may make that uphill battle for children diagnosed with nemaline myopathy in future generations a little easier. In the last ten years there have been extraordinary developments 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 two research projects to begin, you can read more about the projects here.
Oxford Town and Gown: On the 14th May, Team MAP Nemaline took on the challenge of running 10K around the city of Oxford. A team of more than 20 runners took on the adult and junior races on a beautiful sunny morning. Meriel was honoured to be asked to start the race and was joined by her friend Lulu at the starter’s podium. Her older brother Miles also hot-footed it back to assist after completing the 3K junior race in a terrific time of 15 minutes and 11 seconds. More than £10,000 was raised by the team, who were joined by family friend and TV star Alex Polizzi to fund new projects into Meriel’s condition. Meriel and her family would like to thank everybody who either took part, sponsored or cheered on the team, you are all brilliant and we hope you will all be back next year!
Dreamstone Triathlon: In August 2016, Meriel’s vision of placing her ‘Dream Stone’ at the top of Mount Snowdon became a reality. After weeks of planning by Meriel and her good friend and carer Anna-Marie, the MAP Nemaline team completed a very special triathlon. Meriel kicked off the event by completing the swim near her home in Oxfordshire, her teacher took on the second leg of this epic adventure by cycling 170 miles to Snowdonia and there, he was joined by Meriel and the rest of the MAP team who took on the climb to find a suitable place for the stone. Meriel and her fellow triathletes would like to thank all those, near and far, that supported them on this journey and helped them to raise almost £19,000 towards research to find treatments and cures for Meriel’s condition.
2015 news: In Autumn 2015, MAP Nemaline helped to bring about a one day workshop held by Muscular Dystrophy UK, bringing together researchers and clinicians from all over the world to review the field of nemaline myopathy. The aim was to describe strategic areas for an international grant call into nebulin-related nemaline research to drive forward the development of treatments.
This grant call was made largely possible by MAP Nemaline and was launched in November 2015.
Thank you for supporting MAP Nemaline which will directly fund research into nemaline myopathy, thereby giving a glimmer of hope to others… Thank you.
How you can help
- Support MAP Nemaline by making an online donation
Setting up a family fund like MAP Nemaline is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our family funds.