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.
MAP Nemaline
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. As we begin 2025, Meriel, who has chronic scoliosis, needs full support in her daily life. She cannot support her own weight and uses a molded chair for stability, with help for all her care and activities. Machines assist her breathing 24/7, help her cough when she’s unwell, and provide nourishment through a gastrostomy tube. Although her physical condition has deteriorated over the years her beautiful smile and great sense of humour remains the same and brings joy to us all.
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 three research projects to begin, including one on improving diagnosis and one looking at slowing down muscle atrophy.
Latest News
Oxford Town & Gown: May 2025
The MAP Nemaline team will take part in their third Oxford Town and Gown 10K on Sunday 11 May 2025. Meriel’s school will take on the scenic 10k course, raising funds for nemaline myopathy research.
Mount Kilimanjaro: October 2024
Meriel’s piano teacher, Sophie, climbed Mount Kilimanjaro in 2024, raising an incredible £6,000 for our MAP Nemaline fund. Inspired by her pupil, Meriel, who lives with nemaline myopathy, Sophie’s efforts contributed significantly to ongoing research.
“I have the pleasure of teaching Meriel, a wonderful and incredibly inspiring young lady who was diagnosed with nemaline myopathy.”
SophieMeriel's teacher
Natural History Study Funded: July 2024
Meriel’s family are delighted that fundraising has enabled the creation of a natural history study for people living with nemaline myopathy in the UK. Information collected through natural history studies, such as this one, can benefit clinical trials by helping to identify reliable and viable outcome measures – a set of measures used in clinical trials to test if a specific drug is making a difference – as well as identify people who are suitable to participate in trials.
Concert at Deddington Church: May 2019
Following a busy weekend taking part in the Oxford Town and Gown event, Meriel and her family attended an evening of baroque music performed by the Cothill House choirs. The evening included a stunning violin solo from Leo Zhu, a beautiful solo by Meriel’s brother Miles, and uplifting performances from the orchestra and choir. Over 130 guests attended, raising an incredible £14,300 for research into Meriel’s condition. A heartfelt thanks to all who made the evening a success.
Fundraising dinner at The Ashmolean with Nawamin Pinpathomrat: November 2018
At a special dinner hosted on the Ashmolean rooftop, 50 guests enjoyed an orange-themed menu designed by Masterchef finalist Nawamin Pinpathomrat. A fantastic auction was held, raising an incredible £46,000 for nemaline myopathy research.
Thank you to everyone who contributed to the success of the event, including The Ashmolean, Benugo for generously donating the food, as well as everyone who donated or bid on auction lots during the evening. A special heartfelt thanks to Nawamin for dedicating his time to support our fund and for sharing such meaningful moments with Meriel and Miles – they remain his biggest fans!
Charity basketball match against the Warwick Bears: June 2018
The MAP Nemaline team, as the TDS Tigers, faced off against the Warwick Bears WBC, raising £800 for nemaline myopathy research. The day was an unforgettable experience playing against elite players, including Team GB and Invictus Games athletes.
Oxford Town & Gown: May 2018
The MAP Nemaline team participated in their second Oxford Town and Gown 10K. Meriel and Miles led the 3K race while their father, family, and friends completed the scenic 10k course, raising over £7,000 for nemaline myopathy research.
Launch of The Dream Stone: April 2018
The Dream Stone was released. This inspiring book tells the true story of Meriel’s dream to place her stone to the top of Mount Snowdon. In 2016, her dream came true with the help of her friend and carer, Anna-Marie, who led the epic expedition.
The book includes drawings by Meriel and her brother Miles, making it even more special. You can order The Dream Stone online now, and the money raised will help fund research into nemaline myopathy.
Parallel London: September 2017
Meriel, Miles, and his friend Ottie completed the 5K route at Parallel London in Queen Elizabeth Olympic Park, raising almost £3,000. They came up with some fun fundraising ideas, like “borrowing” families picnics and then selling them back at their school’s sports day. What a creative fundraising idea!
Oxford Town and Gown: May 2017
The MAP Nemaline team of more than 20 runners ran the 10K in Oxford. They raised over £10,000. Meriel started the 10k race alongside her friend Lulu. Her older brother Miles completed the junior race in a speedy 15 minutes. Family friend and TV star Alex Polizzi also joined to support the cause.
Dreamstone Triathlon: August 2016
Meriel’s dream to place her “Dream Stone” on Mount Snowdon came true! After weeks of planning, Meriel, her carer Anna-Marie and the MAP Nemaline team completed a very special triathlon. Meriel completed the swimming leg near her home in Oxfordshire. Her teacher then took on the second leg, cycling 170 miles to Snowdonia. Here he was joined by Meriel and the rest of the team who climbed Snowdon and found a spot for the “Dream Stone”. The team raised nearly £19,000 for nemaline myopathy research.
Nemaline Myopathy Workshop: Autumn 2015
MAP Nemaline helped organize a one-day workshop with Muscular Dystrophy UK, bringing together global researchers to review nemaline myopathy and identify key areas for research funding. The workshop focused on four priorities:
- Establishing international clinical/genetic databases.
- Improving the diagnosis of nebulin-related nemaline myopathy.
- Understanding its causes.
- Developing potential treatments.
This led to the launch of an international grant call for nebulin-related research, supported by the MAP Nemaline fund. The workshop emphasized the importance of collaboration and patient registries to advance research and treatments for this rare condition.
WellChild Inspirational Child Award: November 2015
Meriel was nominated for the Inspirational Child Award by her teacher and honored at the 2015 WellChild Awards. The award recognizes children who show exceptional courage and positivity despite serious health challenges. Meriel was presented with the award by Prince Harry at a special ceremony in London, where her remarkable strength and spirit were celebrated by all.