The race to save our wee warrior
Family on their lung transplant hopes for three-year-old son Zac
It breaks Ashley and Gordon Gunn’s heart knowing that another child will have to die before their own son’s life can be saved.
Three-year- old Zac is fighting Pulmonary Hypertension (PH), a rare and life- limiting condition that affects the heart and lungs.
The toddler is living on borrowed time and is in desperate need of a new set of lungs but, because he is so small, his donor needs to be under nine years old.
As the new opt- out system for organ donation does not apply to children under 16, Zac’s life now depends on a family making a difficult decision as their own little one lies dying.
Ashley, 34, hopes parents who find themselves in this horrendous situation will realise that, although their child’s life cannot be saved, their organs could save the lives of others.
The mum of two, from Motherwell, said: “Zac is a very poorly little boy, although looking at him you would never know. He is in desperate need of a new set of lungs and is living on borrowed time.
“His dad and I were over the moon when he was put on thee transplant list back in March, especially as the new opt- out law had kicked in, which we thought would increase the chances of finding a donor.
“But our joy was short-lived when doctors told us, because he is so small, Zac can only accept lungs from m a baby or child up to the age of nine, which means s a child will have to die for or his life to be saved.
“Our hearts sank even further when we discovered the opt- out law does not apply to anyone under the age of 16, which means parents nts will have to give their consent as their child lies dying. It’ s a horrible situation for any family to find themselves in, especially if they didn’t see the question coming.”
Ashley, who is also mum to Jacob, four, added:: “As the mum of two wee boys, I appreciate how distressing it would be to be asked about donating organs after just being told my child could not be saved.
“But if I was prepared for the question and knew a part of my dying child could live on in someone else, giving them a chance in life, I would be willing to give my consent.
“There are not enough adult organs to go around and the number of children who find themselves dependent on life support is even slimmer so it is vital for us to get the message out there, not just for Zac but for all the other little kids waiting for a transplant. They should have the same rights as adults when it comes to organ donation, perhaps more so as they have their whole lives in front of them.
“I’m hoping by sharing Zac’s story, it will raise awareness of organ donation in kids and will encourage families to have the difficult ‘what if ’ conversation so they are prepared if the worst were to happen. It’s natural for parents to want to cling on to their dying child but we are clinging on to our wee boy too. Zac is such a wee fighter and we will fight for him with every breath in our bodies.”
The toddler was diagnosed with PH in August 2019 after doctors ruled his blood vessels were too small for his heart to be able to pump blood through his body. The youngster had gone through five weeks of tests, first at Wishaw General Hospital, then at Glasgow’s Royal Hospital for Children before his case was transferred to London’s Great Ormond Street.
His mumm and dad were told they wouldw be lucky if Zac survived until that Christmas but 118 months later and their “we warrior” is here, astounding all his doctors and consultants.
Ashley said: “Zac was a very happy baby but, when he turned one, I knew something just wasn’t right. He would get a terrible cough and would be exhausted after a small period of running about. I expressed my concern to the GPs and doctors but was told he was fine.
“As his mum, I had a feeling there was something seriously wrong and in August 2019 I took him to the GP and asked to be referred to the hospital, where they told us it was just a bad chest infection.
“After two weeks on antibiotics and oxygen, I still wasn’t convinced and pleaded with them to do more tests and on August 23 our lives were shattered beyond words when he was diagnosed with PH and given just five months to live. Our world crumbled around us.”
Ashley, who along with husband Gordon, 35, has raised more than £10,000 for research into PH, added: “Zac was flown as an emergency to
Great Ormond Street, wherehe he h was put in high dependency. The doctors were great at explaining ing everything and five weeks and three hospitals later, we were ere allowed to go home with two wo types of oral medication. “In December 2019, Zac ac was fitted with a Hickman n line through which IV V medicine is pumped d
2 4/ 7. The d r ug epoprostenol increases blood f l ow in the narrowed vessels in his lungs. He has to carry the pump around with him all the time in a small rucksack. “Although the drug is slowing the progression of his condition down, the 52 doctors and PH specialists who got together to discuss Zac’s case all agree a transplant is his only life-saving option.”
Liverpool- daft Zac, who has started nursery, has touched the hearts of everyone he meets, including footballers David Beckham and Andy Robertson.
Ashley, who lost her dad Steven Dunn, 57, to a heart attack last year, said: “There is something magical about Zac. By rights, he should not be here.
“When we first went down to Great Ormond Street, doctors said it was the worst case of PH in a child they had ever seen and could not believe the child who was trying to climb out of his crib in the high-dependency unit was the same child whose results were in front of them on paper. “David Beckham came to visit the kids in the hospital and Zac, who should have been too ill to stand up, was having a kickabout with him in his pyjamas. He even got him to sign his Liverpool ball.
“He’s also formed a special friendship with his hero Andy Robertson, who he first met at a Scotland camp in November 2019. Andy has kept in touch with us ever since and sent the boys Christmas presents through his charity AR26.”
Ashley added: “Zac seems to have a special effect on everyone he meets and he deserves to keep living. He’s our wee warrior and we want to give him his best life. That’s why it is so important that parents discuss donating their children’s organs if the worst is to happen. It’s Zac’s only hope.
“If his dad or I could give him our lungs, we would in a heartbeat. But we can’t so we are relying on the kindness of strangers. Our little boy has so much living left to do.”
When Zac was given just five months to live, our world crumbled around us