Pictured from left to right: Keith Beehan, Derek Butler, Viktoras Narbekovas, James Stapleton, Des Daly, Jordan Leahy, Shane Leahy and Gareth Meakin. Other people absent from the photo but present on
Members of Urlingford Fire Brigade and friends presented a cheque for €2,065 to Des Daly following their recent car wash and collection day at Urlingford Fire Station in aid of 'Des's breathe easy fund'.
Des is a popular Gortnahoe father who endures a daily struggle against a rare lung condition. He can hardly breathe and needs around the clock medication and attention to survive.
In January 2016, Des was diagnosed with the extremely rare disease Lymphangiomatosis, or GLA (General Lymphatic Anomaly), which affects his lungs, chest and other vital organs. Des is the only known patient in Ireland with the condition, which strikes one in fifteen million of the population.
Des needs to fundraise at least €120,000 for the operation, which can only be carried out in Philadelphia by a team of world class surgeons. Unfortunately, his health insurance company won't pay for the operation as it is outside Europe. All the European Doctors Des has contacted, have directed him to Dr Itkin, of the Children's Hospital, Philadelphia. So rare is Des' condition, that it is often misdiagnosed. But without a daily cocktail of pain relievers, and constant hospital visits to drain his lungs, it's feared he could quickly succumb, and die from his ailment.
In 2004, Des had to have two large cysts removed from his neck: at the time he seemed to be in the clear, but in 2015, the first warning signs appeared that all was not well. “I was in and out of the Doctor's, and he sent me to Kikenny, to have a camera put down my throat.” All through 2015, Des was short of breath, and suffered aches and pains. “Things were not improving. When I lay down at night, there were all sorts of noises, crackling and popping... I was breathless. I couldn't even walk.”
More scans and X-rays in Kilkenny revealed gallstones, inflammations, and fluid in his chest. By sheer luck, Dr John Faul, one of the best Respirologists in the world, recognised the rare condition from his work in the United States, and recommended that Des urgently seek surgery there.
Des, who works in Autobody in Urlingford, has three young daughters: Jessica (15), Michelle (8), and Emilia (1). His mother, Catherine Purcell, is well known in Gortnahoe village, where Des moved in 1999 from Dublin.
“There is no known cause for this condition, and no known cure,” says Des. “You've just got to treat it as you go along. I have it in the bones as well. My pelvis has thinned out.” The ailment “is like acid, in that it eats the bones away.” In his weakened state, Des also contracted pneumonia. Doctors don't know how long Des can live.
In daily agony, Des lost 10kgs in weight, with sore ribs, abdomens, and lungs. Following the operations, Des can now hardly walk 30 yards, and is on three strong pain killers, twice a day. The fluids are compressing his organs, but the American doctors are sure they can return him to health if they're only allowed to operate.
To donate to 'Des's Breathe Easy Fund' go online to www.gofundme.com/2w3nvvng
Des's bank details are: Bank of Ireland, Liberty Square, Thurles.
A/C No. 27760202
Sort Code: 90-44-64