Video: Family of Bury teenager urge people to sign donor register during National Transplant Week

THE possibility of outliving a grandchild is something most grandparents never have to face. But Bury St Edmunds couple, David and Carol Nicholson, have watched their beautiful grand-daughter Holly Pereira battle cystic fibrosis to the point where she now needs a double lung transplant within the next two years if she is to survive.

Holly was diagnosed with the genetically inherited disease, which affects the digestive and respiratory systems, when she was just 18 months old. Despite a daily regime of medication, her lungs have been damaged by repeated chest infections, leaving her constantly tired and struggling to breathe.

Like 10,000 across the UK, the brave 19-year-old is now awaiting a call to say that a donor has been found which could ultimately save her life.

The situation for the Pereira family is doubly heartbreaking because Holly’s brother Jake, 18, also has cystic fibrosis and will also need a transplant at some point.

In a bid to encourage donors to come forward, Holly, who has been on the transplant register since April, posted a video on YouTube explaining how she can “only imagine what it feels like to be able to breathe with ease.”

Mr Nicholson, 67, said although the family had lived with Holly’s condition for 18 years, he was “choked” when he watched the video.

“She posted it without even telling any of us and when I watched it for the first time, I was in tears,” he recalled. “It was very emotional because although we have lived with this situation for so long, being realistic, if Holly doesn’t get a transplant within the next two years, it’s unlikely that she will be around for my 70th birthday.”

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Mrs Nicholson added: “There are lots of other kids in the same condition as Holly, but she has made an effort to highlight the situation. Most of our friends don’t realise how serious cystic fibrosis is because Holly has always been so sensible and positive about her situation so it’s hard to imagine that she’s so sick.

“We are very proud of what she has done and we want people to come forward and register so it gives youngsters like her a chance in life.”

Holly is keen to get people to sign up for the NHS Organ Donor Register and would ultimately like the government to introduce an “opt out” policy, where organs would automatically be donated unless a person specifically requested otherwise.

She concluded: “I think organ donation has to be one of the best things a human being can possibly do. To say to someone that you can have what I no longer need, so therefore you can live on and be saved, is one of the bravest and kindest gestures anyone could make.

“I worry that my call won’t come in time and it will be too late, but I have to be strong and get through whatever life throws at me.”

Emily Thackray, chief executive of the transplant charity, Live Life Then Give Life, said: “A transplant can save or radically transform a person’s life, but sadly due to the shortage of organ donors in the UK, three people on the waiting list die every day. The majority of us support the concept of organ donation, so it is important to take this opportunity to think about our wishes and talk to our families about them.”

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