BRIDGWATER residents rallied together to help a 5-year-old who suffers from a rare genetic condition and raised more than £1,000 for the cause.
Several events took place in the area recently to support and raise funds for Alanna, who is affected by Fibrodysplasia Ossificans Progressiva (FOP).
A busker and a school also raised funds for the cause while Alanna herself took part in a charity walk organised by her mum Stephanie Edwards.
Stephanie, who lives in Bridgwater, said: “I couldn't be prouder of Alanna. She completed the full ten laps on her specialist trike. She really is amazing.
“We continue to 'Hope, Wish and Believe' that together we will find a treatment or cure for FOP, a condition which turns the body's muscles to bone.”
Alanna (right) during one of the charity events.
Alanna attends Wembdon St George’s School, which raised £230 with a bake sale to help the five-year-old and the FOP Friends charity.
The incredibly talented busker, Simon Sims, when hearing of Alanna's story, immediately knew he too wanted to help raise awareness of Alanna’s condition as well as funds to support the research.
Simon raised an incredible £375 busking in the town centre of Bridgwater.
On Saturday, April 23, Friends of Alanna came together at Victoria Park where a charity walk for FOP took place to celebrate our Global FOP Awareness Day (the day on which the gene for FOP was discovered) as well as St George's Day.
Stephanie and Alanna
Friends of Alanna walked, cycled, and scooted 10 laps around the park to raise support for Alanna and FOP Friends and celebrate the charity's 10th anniversary.
The team smashed their £1,000 target on their online fundraising page for FOP research.
Stephanie added: “I was overwhelmed that everybody wanted to chip in and do their part to raise funds for Alanna.”
Alanna and other children during one of the charity events held recently
FOP, as explained on the charity’s website, is one of the rarest and most disabling genetic conditions known to medicine. It affects around one in a million births.
It is characterised by shortened big toes and unusual swellings across the body.
It is a very rare genetic connective tissue disorder characterised by the abnormal development of bone in areas of the body where the bone is not normally present (heterotopic ossification), such as the ligaments, tendons, and skeletal muscles.
Malformed big toes, combined with swellings are also classic signs of the rare genetic condition FOP.
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