A local journalism student who lives with rare degenerative condition Mucopolysaccharide Disease will tonight hold a raffle to raise funds and awareness of the illness.
Having been diagnosed with the condition at the age of just four, Deborah Boyle has been receiving medical treatment most of her life. A three year spell of not taking medication for the illness culminated in her being told by experts at 15 years old that she may not live to see her 27th birthday.
“I had to get a drug infusion, which meant I got a great big needle stuck in my arm, and I hate needles. When I was 12, I stopped taking the medication because of the side effects - at that age you shouldn’t be getting emotional and it was making me very emotional. After three years the doctors noticed a massive deterioration - I asked them how long I had to live and they said ‘you’ll be lucky to reach 27’, it was then that I started taking the medication again.”
Deborah shared the dreams of her fellow teenagers - she wanted to live life and pursue her dreams. “I wanted to go to university and get a degree and a masters and then a doctorate.”
The Thornhill College past pupil is currently studying for a Masters Degree in Journalism at the University of Ulster’s Coleraine campus and admitted to the Journal: “I feel fantastic”.
However, Deborah, now 23, was quick to point out that she is well aware that not everyone who has the condition has been as fortunate as she has. “My particular strain is treatable but many others are not. I would have been in a wheelchair now and blind without the treatment but thanks to the treatment, I’m now not going to die from the condition by the age of 27. But other people with the MPS strains can’t be treated and that’s why it is so important to support the MPS society which undertakes important research as well as providing advice and support.”
To do her bit for the MPS Society, Deborah is to hold a charity raffle at the Oval Bar, Spencer Road tonight. A number of local businesses have come out to support the young Derry woman in her efforts to raise funds and awareness by donating goods and services for a charity hamper while a second prize of two tickets for the North West 200 have also been donated.
Tickets are priced just £1 and are available at the Oval Bar and Deborah is urging the public to support the very good cause.
Among the businesses supporting Deborah are Paul’s Butchers; Fiorentini’s; Havana Hair and Beauty; Tesco; Sainsbury’s; SuperValu and Quay West while Zest Cafe, Spencer Road is to provide food during the raffle event.