Little Sam McCausland has Duchenne Muscular Dystrophy (DMD), the most common form of Muscular Dystrophy and the biggest genetic killer in the UK and Ireland.

Sufferers typically become quadriplegic between the age of 10-15 and most boys with DMD die by the end of their teens.

After her son's diagnosis earlier this year and after learning that there is currently no treatment and no cure for DMD, Sam's mum, former Cambridge House pupil, Tracy McCausland and her husband, William, decided to take action themselves.

She told The Ballymena Times: "There is a pitiful lack of funding for research into this disease, and faced with such a bleak prognosis for our son we approached friends and colleagues and gained their support to set up a charity.

"Thus, S.A.M. (Struggle Against Muscular Dystrophy) was born.

"Our vision is to ultimately improve the treatment, quality of life and long term outlook for those affected by Muscular Dystrophy through awareness, research, education and advocacy," she said.

The couple, who now live in Hillsborough, are singular in their determination to help their son and others like him, having almost lost him to meningitis as a baby.

Their other son, Callum (5), who Tracy describes as her "light", has gross and fine motor problems, is unable to communicate through speech and has a diagnosis of severe Dyspraxia.

"We are now facing a lengthy wait for results of DNA analysis to determine the precise genetic mutation which is responsible for Sam's condition. This could take up to a year," she said.

"There are literally hundreds of mutations which can lead to muscular dystrophy – some are caused by missing parts of the genetic code on the dystrophin gene, others by duplications of parts of the code.

" In other cases, a tiny part of the genetic code is affected by a premature stop signal, which causes the DNA to halt the manufacture of dystrophin in which caseinadequate or faulty amounts of the protein are produced.