ON January 4 this year, a young Dungannon man wrote a list of goals he wanted to achieve over the next 12 months, one of which was to run the Belfast Marathon to help raise awareness of the rare medical condition he suffered from.
Tragically, only 10 days later, Barry Shiels lost his battle against the disease - known as Fanconi Anaemia - but the 25 year-old’s infectious zest for life has inspired his family and friends to carry out that wish on his behalf by running the marathon in Belfast next Monday.
Described by his family as “a true fighter, our hero”, Barry was diagnosed with Fanconi Anaemia in February 2011.
The condition is an extremely rare inherited blood disorder which leads to bone marrow failure, preventing the bone marrow from making enough cells for the body to work normally.
It is estimated that between 100 and 150 people, including children, suffer from the condition throughout the UK and Ireland, with most cases being diagnosed before the age of seven and nine per cent diagnosed in adulthood.
As a result of Barry’s diagnosis, doctors asked him to attend Belfast City Hospital’s Bridgewater Suite Haematology Department twice weekly for blood and platelet transfusions.
At high risk of bleeding or contracting infections, Barry found his trips to hospital - which lasted between eight and nine hours at a time - left him feeling exhausted and worn out.
His four brothers were tested for compatibility as possible donor matches for Barry, but, unfortunately, none were suitable.
Despite that disappointing result, however, a suitable donor was found to be available via the Donor Register and Barry was admitted to St James’ Hospital in Dublin, where a bone marrow transplant was undertaken on October 18, 2011.
Clearly determined to beat the condition, Barry’s passion in everything he did was a source of inspiration and pride for his family.
In a statement, they told how: “He lived his life to the full, if he wanted to do something or go somewhere, he just made the decision, planned it and did it.
“One of his favourite pastimes was climbing the Mourne Mountains, camping and many other outdoor activities. He never let anything get in the way or stop him, and was a keen golfer and Ten Pin bowler. Barry was always very competitive and many times, against all odds, he would win, which was totally amazing since he was struggling so much with his illness.
“Almost every day, another problem would present itself, but Barry just got through each day the way he always did. He fought it.
“Barry was a true fighter, our hero, even though the news from doctors was not always good and often frightening.”
Describing Barry’s “great attitude to life”, his family have told how the young man was always planning ahead and, at the beginning of January, those plans were written down in a list of seven special goals.
“These were things that were important to him”, Barry’s family explain, “special things that he wanted to achieve this year. His first goal was that his blood count would improve. Another goal was that he would run the Belfast Marathon himself to help raise awareness and money for Fanconi Anaemia.
“Barry lost his battle against Fanconi Anaemia on January 14, 2012. He never gave up hope, he had a very strong, beautiful spirit.
“He inspired so many people, and one of his special goals will be achieved on May 7, 2012, by his family and many, many great friends and colleagues. If you would like to give a donation, you can do so by visiting the websites www.fanconihope.org or www.justgiving.com/jonnyshiels Thank you.”
You can also find out more about other fundraising events, including a sponsored climb of Ireland’s highest mountain, planned in Barry’s memory by logging on to the websites above.
There are also several collection boxes available for donations at local business premises in Dungannon and Cookstown.