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I'm taking part in Great Limerick Run on Sunday 5th of May 2019 to support our Four chosen charities, The Alzheimer Society of Ireland, Bone Marrow for Leukaemia Trust C.L.G., Cliona's Foundation, Novas . My family has personally benefitted from the Bone Marrow for Leukaemia Trust C.L.G. Please read my fathers story below.
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Read more The Bone Marrow for Leukaemia Trust and The Great limerick Run

Paul Daly was diagnosed with Chronic Lymphocytic Leukemia (CLL) in 2006 at the age of 49 and within 3 years had received his first round of 6 months of Chemotherapy. He had 3 years of remission before his second rounds of Chemo sessions began.

His second Remission did not last long and he was put on a drugs trail for the new miracle drug thanks to Professor O’Dwyer in UHG clinical trial drug called Ibrutinib in 2014. It initially transformed everything for Paul and he had no more adverse events for twelve months and the disease had started to regress.

Paul felt he was making some contribution to medical knowledge by taking part in this clinical research, which will ultimately pave the way for new and improved drugs and treatments.

“I felt that I was making a contribution in some way to research, by being part of the process. The more scientists know about this disease the better it will be for me and for everyone else with this disease. For me, it felt good to be a more active participant rather than a passive recipient of medicine and to contribute in some way, even if it’s only a teaspoon in an ocean of knowledge,” Paul says.

“If I had to take part in another clinical trial I wouldn’t give it a second thought and I’d encourage anyone to embrace the opportunity with both hands. Taking part in clinical trials empowered me to find out more about the disease and has also informed important decisions that I’ve had to make along my cancer journey,” he adds. The avid rock climber, pictured scaling a sea cliff near the Cliffs of Moher in County Clare two years after diagnosis, says every discovery, big or small, is a step closer to reaching the summit of cancer research and discovering new and improved treatments. “Cancer research is vital to keep moving forward. The battle against cancer is more for the medical and scientific community than for the patient. This battle is about a quest for information and knowledge and research is vital if we’re going to win that battle,” Paul says. - See more at: https://www.cancer.ie/research/newsletter/supporting-cancer-clinical-trials#sthash.gokkKerq.dpuf

Unfortunately, in December 2015 the drug stopped working and Paul was scheduled for a Bone Marrow Transplant in February 2016. It was at this time the Bone Marrow for leukaemia Trust had their first interaction with Paul and his family.

Paul lived on the West coast of Ireland a mere 160 miles from St. James Hospital, Dublin the only hospital in Ireland to get a Bone marrow Transplant. He was in hospital for 5 weeks before being released to his family for care and was required to live hear the hospital in case of emergencies and bi-weekly visits to the clinics. The Bone Marrow Trust provided a 2 bed for apartment 1 mile from the hospital for Paul’s intended 6 weeks stay. Unfortunately, due to complications the 6 weeks extended to over 18 weeks in the apartment. Paul’s family greatly benefited from this apartment and it meant Paul could have some comforts of home while he recovered from his transplant.

Paul started showing symptoms of Graft Versus Host disease in June 2016 and sadly passed away from the disease on the 25th of July 2016.

Our fundraising is in support of the Trust that provides families like Paul apartments close to the hospital, which have proved invaluable for patients and their families specifically post allogeneic stem cell transplantation. The apartments available are allocated to patients who are coming from outside Dublin and do not have any family or relatives in Dublin with whom they can stay.

Sarah Daly's Fundraising Page

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