Dearbhail Hogan with her mother Sinead.
A POPULAR Newtownbutler A level student who suffers from a rare form of muscular dystrophy has defied all the odds in coping with her restricted movement lifestyle.
Dearbhail Hogan (18), who lives with her parents, Will and Sinead, and her younger brother and sister in Aghagay Meadows on the edge of the village, attends St Comhghall’s Secondary School in Lisnaskea.
Currently, the family are fund-raising to buy a £3,980 double bed, and they are almost there.
Yesterday, Dearbhail was taking a break from school and, speaking in her stead, her mother, Sinead spoke about the impact of her daughter’s medical condition, and how she was coping.
“She has a rare form of MD called laminopathy, and there is no other child in Ireland with the same condition, so we have been going to London every six months to Great Ormond Street Hospital for treatment.
“She has had this condition since birth, although she could walk till she was 10 when her condition got worse. She underwent spinal surgery in 2007 which was life-changing.”
Since then, Dearbhail has been a regular wheelchair user and is a familiar sight around St Comhghall’s which, her mother, explained, was a big part of her life.
“ Her condition does interfere with her studies but, while her health has a big impact on her life, her school life is important, socially. She is very sociable and she has a great bunch of friends at school, boys and girls.”
Dearbhail is into social networking and music (she is a member of the school choir), and attended the recent school formal.
“I can tell you she’s going to fulfil her life to the best of her ability and, it’s for that reason, we’re fund-raising for a double bed, now she’s an adult. The NHS won’t fund it.”
Speaking from the Hogans’ specially adapted bungalow home, Mrs Hogan had nothing but the highest praise for the community’s response.
Donations were still coming in as we spoke and, so far, the Western Brand plant near Lisnaskea has contributed £900, the Clones Bikers £100 and €610 (the motorbike run was organised by Joe Parker), and a local girl, Tini Nolan has scored with a 10-week ‘bonus ball’ idea that raised £1,036.
“She sold 98 numbers, she raised £750 from a fancy dress idea and she’s running the ‘bonus ball’ again.
“I would think that, within the next three to four weeks, we will have raised the full amount. The people like that in the town have been absolutely unbelievable, Joe and Tini especially. I just had a girl call with me this morning with an envelope and a little card and a donation, it’s little things like that I find very humbling, especially coming up to Christmas when times are hard.
“People have been very, very generous.”
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