Sam McCausland suffers from muscular dystrophy, a progressive muscle-wasting disease which predominantly affects boys.
Sam will be two years-old on August 24 this year; most boys with certain types of Muscular Dystrophy die by the end of their teens.
They endure a disease which at its most severe causes muscles to weaken to a point where sufferers become quadriplegic between the ages of 10-15 years, relying on ventilators, feeding tubes and heart support.
Sam's parents don't yet know which type of muscular dystrophy he suffers and as lengthy investigations continue they hope it is the milder Becker type rather than the Duchenne variant; the end result is no less dire, but variations in the progression of the disease might mean more time in which to find treatment or cure.
anguish
"This is the biggest genetic killer in the UK and Ireland," said Sam's mum Tracy, "yet there is very little awareness of the condition and the suffering and anguish it causes. There is currently no treatment and no cure.
"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."
The mission statement of that charity, SAM (Struggle Against Muscular dystrophy), 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".
The reality for its founders is a race against time.
"We must find a treatment, and eventually a cure for Duchenne and Becker Muscular Dystrophy," said Tracy. "Sam and all the other boys like him deserve a future."
The SAM campaign is well underway and has already raised awareness and touched hearts.
"A local seven year-old girl who heard about the pleasefixsam campaign asked all of her friends not to buy her any birthday presents and instead to donate money to the charity to help Sam and other MD sufferers," said Tracy. "This gesture moved me and many others to tears."
A number of fundraising events are planned, among them a parachute jump on June 14, aimed at raising £7,000. Jumpers must be aged between 14 and 60 and there is a weight limit of 15 stone for men and 13 for women. Each jumper will be asked for a non-refundable commitment fee of £40. The cost of the jump is £200 so a minimum sponsorship of £350 is requested.
Fundraisers will also be saddling up on September 12 for a three-day, 300-mile charity cycle from London to Paris in the hope of raising £5,000 and plans are in the pipeline to ask beauty and hair salons to get involved in an awareness and fundraising day and to encourage people to run fundraising coffee mornings.
People are also being urged to each tell five others about Sam - whether it be over coffee in the canteen or by forwarding the website details - and a massive charity Spring ball is being planned for next year, all in aid of D/BMD research.
"Sam and I will also be flying to London on June 16 to join other MD sufferers in a parliamentary lobby," said Tracy. "We also want to appeal to other families in Northern Ireland who are affected by this condition to contact us via info@pleasefixsam.com or on 92680078."
More information on the SAM campaign is available online at www.pleasefixsam.com and campaigners urge everyone to log on for ideas of how they can help and to learn more about muscular dystrophy.
Donations can be made online or cheques, made payable to Struggle Against Muscular Dystrophy, sent to 2 Millvale Wood, Hillsborough BT26 6JB.