SIX years ago life was turned on its head for the Darren and Tara McColgan from Slievemore Park. Just as they were getting used to life as life as parents of two young boys, they received the devastating news that their youngest son Travis - who was just a baby - had the degenerative disease Duchenne Muscular Dystrophy.
The diagnosis came as a complete bolt out of the blue and Tara says that it is still something they haven’t fully come to terms with. “You learn to live with it,” she said, “but no, I don’t think you ever come to terms with it.”
Now six, Travis shows few signs of the disease. He does have some mobility problems - and cannot run or jump. His bigger brother Evan (7) is always on hand to lend a helping hand.
In every other way Travis is a healthy and happy wee boy who has settled into primary school and enjoys the same activities as his peers.
This, Tara said, makes it easier for them to get through each day. “We don’t look too far to the future. We know what is coming, but we don’t focus on it. We just try and make the most of each day and get on with living our lives.
“Birthdays are tough though. We feel as if each birthday is like three or four rolled into one. We know we are counting down, as well as up.”
The future may seem bleak for Travis - those with Duchenne rarely live beyond their late teens or early 20s - but Darren and Tara refuse to feel sorry for themselves or for Travis.
“We don’t feel we have a hard luck story to tell. We are very lucky. We have two wee great boys and we don’t treat them any differently,” Tara said.
“They get to choose where we go for holiday each year - Butlins, Haven or camping - but apart from that we just try to raise them the best we can,” Darren added.
The family learned of Travis’s diagnosis when he was just 10 months - although within a week of his birth there were signs that something just wasn’t quite right.
“He dropped 10% of his birth weight in the first week so was admitted for observation to the children’s ward,” Tara explained. “It was then we discovered something was not right with his liver function and he went on to have all sorts of tests. Then when we found out it was Muscular Dystrophy we had to find out which kind - was it Becker - in which in the children still live? Or Duchenne?”
Duchenne Muscular Dystrophy affects one in 3500 boys. While it can sometimes be genetic, Tara was tested and found not to be a carrier. Travis’ diagnosis was just “one of those things”.
Yet, the McColgan’s don’t feel bitter about it and manage to see the positives in Travis’s early diagnosis. “Most wee boys won’t be diagnosed until they are a bit older, maybe two or three. We think maybe Travis got a head start in terms of physiotherapy and treatments because we knew earlier.
“People do sometimes say to us would we not rather have had two years of not knowing, but we figure we found out for a reason and it gave us more time to fight for what we need for him,” Tara said.
The couple sold their home and battled to get a bungalow which has been adapted to suit Travis’ needs and will be adapted further as his mobility deteriorates.
He has been made very welcome at Chapel Road Primary School who have adapted the school building to suit his needs and the couple say they will continue to fight to get him all the help they can.
Part of their fight is to fundraise for Action Duchenne - a charity they describe as their “lifeline”.
“There is very little information out there about Duchenne. As it is quite rare there isn’t a support group locally. Action Duchenne have been there for us totally.”
Formed in 2001 the charity raises funds which go directly into research and support. There are no admin costs so every penny goes direct to helping to find a cure for the disease.
Tara and Darren have arranged a fundraising night in the Delacroix on March 26. Doors will open at 9pm and there will be live music til late as well as a raffle. The ticket price is just £10.
“This is the first time we have done something like this, but we want to give something back to the charity who have supported us through the last six years.”
For online donations in Travis’ name please visit www.actionduchenne.org/stopwasting/travismcmenamin or contact Darren and Tara on 02871 219390 or 07902886993.