A CAMPAIGN by a family to fund new research into a rare disease suffered by their young daughter is gaining momentum.

Lucy and Darren Chillery-Watson from Market Lavington, near Devizes, were devastated when they were told their daughter Carmela had a rare form of Muscular Dystrophy called LMNA-CMD when she was just 18 months old.

Carmela, now five, is a little girl who loves to smile and be active and captivated the Duchess of York when she visited Julia’s House children’s hospice in Devizes last year.

Mrs Chillery-Watson said: “Carmela is still quite mobile and relies on her motorised wheelchair for long walks and tired days.

“She loves life and thoroughly enjoys being active but can get upset and frustrated when she can’t do things.” It is feared Carmela may not live into adulthood and doctors originally told her parents she could die before she was ten.

They set up Carmela’s Stand Up To Muscular Dystrophy family fund to raise money for research through the charity Muscular Dystrophy UK.

Her mum, who had to retire from her teaching job to become Carmela’s full time carer has spent the past two years fundraising with the help of her friends, local villages and schools.

Now she is hoping a new research project will forge a way forward in treating the incurable disease. She said: We are looking forward to the potential that personalised treatment has to offer.” The project is funded by a Muscular Dystrophy UK research grant of £1.2 million.”

Carmela’s parents are still hopeful a cure can be found for her condition caused by a mutation in a gene.

At the moment they rely on treatment to manage many symptoms.The Chillery-Watson’s are one of three UK families funding the project. The fund is currently at £7,850. Go to Carmela’s Stand Up To Muscular Dystrophy on Facebook.