‘MY DYING WISH DONOR APPEAL’
A CYSTIC fibrosis patient’s heartfelt awareness raising campaign is to be released after she lost her battle with the disease.
Kayleigh Old died in May, aged 31, just weeks after filming a video raising awareness of the disease and highlighting importance of organ donation.
One of her dying wishes was for her campaign to still be used in the event of her death.
Kayleigh, from Thornhill, Cardiff, worked for the Cystic Fibrosis Trust, a charity dedicated to helping people with the disease, and had undergone a double lung transplant after her own organs were damaged by the disease.
However, her body rejected the new lungs and she was put on a waiting list to find a new donor.
Before her untimely death, she said: “I realise there is only a slim chance of me getting a second transplant and I would say to people please sign the organ donor register and, importantly, also make sure you tell your loved ones your wishes.
“If you don’t they may not be emotionally prepared and find this so traumatic that they could stop your organs being donated after you have gone.
“That limits the opportunities doctors have of helping people with conditions like mine to live longer. I may not get the help I need, and I really hope I do, but I would like to leave a legacy of asking for change in this area.”
Kayleigh was first diagnosed with the condition aged two and she led a normal life until she was 25. At the age of 27 she found that her lung capacity had severely deteriorated and she was put on a waiting list to receive a transplant. Eight months later, she was told that a match had been found and she was “blue-lighted” from her home in Cardiff to Harefield Hospital in Greater London.
The procedure went well but her body began to reject the new lungs. In the months before she died, Ms Old was continuously linked up to an oxygen machine and needed a wheelchair.
Before she died, she said: “I have been very lucky in my life as I have lots of friends who live nearby and come and visit me, even when I am in hospital. And my family is loving and really support me. If I do get another transplant, I would like to spend more time with them. “I would also like to travel more and buy a camper van so I can go touring and see places I have not been to before. But I do have to realise I was lucky to get the call for my first transplant. I want to hope it will happen, but can only wait and see.”
Speaking to us in 2011, Kayleigh revealed she had been diagnosed by chance – when her parents were taking part in a heel prick trial test – when she was only two months old. Her daily regime saw her having to take 35 tablets or more and undergo daily physio.
But her determination saw her working with the Cystic Fibrosis Trust, as a voice for the hundreds of patients with the condition in Wales.
David Ramsden, chief executive of the Cystic Fibrosis Trust, said: “Kayleigh was a vital part of the Trust’s team and did incredible work as a public affairs officer promoting awareness, understanding and policy change particularly among members of the National Assembly and politicians across Wales.
“The fact that she was so determined towards the end of her life to tell her story is testament to how dedicated she was.
“We have lost a very special person and we will never forget her.”