The annual FEARmanagh adventure race will have a special significance for one family with strong family connections with Fermanagh as Fermanagh and Omagh District Council dedicates a trophy in memory of Ciaran Murphy.

Ciaran was diagnosed with cystic fibrosis at birth and passed away in 2014. Before that however he was the recipient of a double lung transplant in 2009. FEARmanagh 2019 takes place on Saturday September 28 and coming just a few weeks after Organ Donation Week is a fitting event to shine a light on the generosity of donors and the incredible impact they have on transplant recipients.

It is also an opportunity to educate, inform and inspire people, to help save and improve more lives.

Ciaran’s father, Conrad, originally from Enniskillen, shared his family’s story: “My son Ciarán passed away in July 2014 while waiting on a second double lung transplant. Before he died we promised Ciarán that we would work to increase awareness of organ donation and that perhaps someone would be touched by his story and join the organ donor register,” Conrad explained.

Ciarán was diagnosed with Cystic Fibrosis at birth and his health deteriorated progressively to the point that in 2006 he needed a double lung transplant.

After spending nearly three years on the transplant waiting list he had a successful double lung transplant in May 2009 with Conrad explaining that the family’s experience with Ciarán gives them a unique perspective:

“In some ways my family are in a unique position as we have experienced the life transforming event that a transplant brings but also the tragedy of a loved one dying whilst waiting for a transplant,” he said before going on to expand on what getting the double lung transplant meant to Ciaran’s life.

“It is difficult to adequately put into words the difference that transplant made to Ciarán. By May 2009 life was a real struggle. Having a transplant gave Ciarán a second chance in life. A chance to travel, a chance to work, a chance to return to studying, a chance to play some sport, the chance to meet his future wife, and importantly a chance to be rid of the long list of medication and treatment he needed to manage his Cystic Fibrosis.

“He loved getting down to Fermanagh to visit his Granny and Grandad and his cousins and simply being able to do this without the aid of oxygen was a miracle in itself”

Ciaran’s uncle, Gerry Murphy, has been a competitor and supporter of FEARmanagh since its inception and it was through Gerry that the idea for a trophy in Ciaran’s memory gathered pace. Team CF will take part once again in FEARmanagh with the first home collecting Ciaran’s trophy.

“The Council has very generously sponsored a trophy for FEAR in Ciarán’s memory to help us raise awareness of organ donation and to raise funds for combatting Cystic Fibrosis, so it provides us with a unique opportunity to deliver on our promise to Ciarán,” Conrad stated.

He went on to talk about his son’s outlook on the legacy of organ donation: “Ciarán always used three simple words to describe his organ donor - hero, love and legacy. He called his organ donor a hero. He believed that deciding to donate an organ leaves a legacy that receives no public recognition yet is the greatest legacy of all.”

Ciarán’s health deteriorated when he went into rejection in 2013 and he was back on the transplant list with the hope of receiving a second double lung transplant.

“We prayed and hoped for another hero to shine a light back into Ciaran’s life. Sadly Ciarán passed away waiting for that hero,” Conrad explained before going on to urge people to discuss the topic of organ donation.

“There are many things about organ donation that we as individuals cannot control including whether there should be an Opt in or Opt Out system. The one thing we can control is having the discussion with our loved ones so that they are aware of our wishes, which may help them when faced with that darkest hour experience and as Organ Donation Week ends this the perfect time for you to consider this and discuss your wishes with your family”.

Team CF are now in the final preparations for FEAR on September 28.