The news doctors felt they had to carry out tests on the little boy to 'rule a few things out' had already brought a terrible sense of deja vue to her and Sam's father William.

Not only had they gone through the trauma of watching him battle Meningitis while just days old - they had also seen similar tests carried out on their older son Callum.

Ultimately these had ruled out Muscular Dystrophy and Callum was finally diagnosed as suffering from a severe form of Dyspraxia.

Callum now faces a variety of challenges - gross and fine motor problems, immature play skills and an inability to communicate through speech.

Tracy admitted by the time Sam who was monitored closely by doctors following his fight against Meningitis reached his 13 month check-up she had convinced herself he was suffering from a milder form of Callum's condition.

However, during the consultation both she and her husband realised Sam's baby doctor "looked worried.

"Sam was still not putting weight on his feet, still not crawling, and had hardly any strength in his arms," she continued.

"The doctor told us that he did not think that Sam was suffering from Dyspraxia, as his other developmental areas were leaps and bounds ahead.

"He said 'we'll do some tests to rule a few things out'. Three hours later I got a call to say Sam's CK level was raised."

Tracy said this news made her feel sicker than she ever had in the past.

"I felt sicker than the day they told us he had Meningitis. Sicker than anything I could imagine. It was like time stood still. I knew what this meant as I remembered waiting for the results of Callum's CK test when they told us Muscular Dystrophy was a possibility," she continued.

"I can't remember much about that afternoon apart from feeling the most agonising pain and total despair.

We were given an appointment to see the Genetics Professor at Belfast City Hospital, and she explained the grim possibilities in relation to Sam's potential diagnosis. She was certain that it was a Muscular Dystrophy, but not sure which one."

The phone call the couple dreaded came on a Friday afternoon.
Sam's muscle sample contained a little dystrophin - the protein which keeps muscles healthy - but it was patchy.

The sample had to be sent to Newcastle to have the Dystrophin quantified and qualified.

Tracy began to spend 'all her waking hours' on the internet talking online to other mums and finding out all she could about Muscular Dystrophy.

A week after Sam's diagnosis was confirmed she and William met with a neurologist.

"He received an hour long grilling from us on every possible scenario - genetics, DNA, prognosis, research etc," she continued.

"We were told it would take up to two months to obtain the results of the further analysis of the muscle sample. This will tell us more in terms of a diagnosis and prognosis."

Tracy said In the past weeks she has gone through "every emotion known to man.

"I have found solace in friends, comfort in the optimism of other proactive parents and a relentless appetite for knowledge as I research every aspect of this cruel disease," she continued.

"I have moments of utter despair, but when I do I look at my boys and realise that it is our job to make every day as precious and as happy as possible, and not to let this spoil the wonder of seeing Sam grow, learn and develop into the clever, funny, mischevious little he is becoming."

Sam is currently learning to walk, and took his first few steps on February 19 aged almost 18 months.

"Watching this is a joy, but it is also tinged with longing and a little sorrow, as I want to know that he will always be able to do this, but fear that one day it will be taken away from him," said Tracy.

"Sam is such a cute little boy. His personality is really starting to take shape. He has a glint in his eye and a devil on his shoulder!! He loves to imitate everything he sees and hears, and is a real fan of his big brother.

"His favourite toys are cars and trucks, and he is mad about Thomas the Tank Engine and Bob the Builder. He's also the littlest Giant (Belfast Giants Ice Hockey).

"I look at him and my heart melts. He has been through so much already in his little life. He is a fighter – he has proved that already, and with our help, love and support he will have the best life."

See also 'Parents pla n parachute jump to raise money'

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