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 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 her peers can.

"We remind Carmela what she has most weeks, especially when she hits obstacles and so we work together to work out how to overcome them.”

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 one of ten funded by a Muscular Dystrophy UK research grant totalling £1.2 million."

Carmela’s parents are still hopeful a cure can be found. Many of the muscle wasting conditions that are supported at Muscular Dystrophy UK are rare, but few are as rare as LMNA-CMD.

The condition is caused by a mutation in a key gene which leads to progressive muscle weakness of the skeletal, respiratory and heart muscles at which point the condition becomes life-threatening.

There is no cure, but treatment can help to manage many of the symptoms. The Chillery-Watson's are one of three UK families funding the project through Muscular Dystrophy UK.

The project will be led by Dr Gisèle Bonne, who will look at all the other genetic changes which alter the severity of the condition, known as modifiers. She said: “We would really like to thank all the families for their fundraising and we hope we will be able to get positive results from this project.

“This won’t create a cure or modify their lifestyle in two or five years from now, but we shall know the condition better and it can help us go further in therapeutic approaches.” The Chillery-Watson family would like to thank the continued support they receive from their local village who put their loose change in their MDUK charity tin at the village Co-op which goes directly to the research fund monthly. The fund is currently at £7,850.

To support the fund message Carmela's parents via Facebook 'Carmela's Stand Up To Muscular Dystrophy'.