Family’s marathon fundraising for “warrior” son, baby Koa

A heroic family’s marathon relay raised over £6,000 for our charity to say thank you for their baby son’s life-saving treatment. 

Sean Arbuckle, from Strabane, raced the Belfast City Marathon as part of a 23-person relay team, raising funds for our Children’s Hospital and his local hospital in Northern Ireland after his son was diagnosed with a rare liver disease. 

Baby Koa, which means “brave one” or “warrior” in Hawaiian, proved his strength and resilience from the very first weeks of his life. At just two weeks old, his health visitor raised concerns about his jaundice, and the tiny baby was taken to his local hospital for tests. 

Results revealed that Koa’s condition was potentially very serious. As there is currently no paediatric liver unit in Northern Ireland, baby Koa was airlifted straight to our hospital.

Specialist clinicians diagnosed Koa with biliary atresia, a rare liver disease where a baby’s bile ducts are blocked, which can lead to liver damage. Koa was rushed into life-saving surgery known as the ‘Kasai procedure’, with surgeons creating new bile ducts for Koa to give him a chance at life. 

Koa’s parents, Sean and Ciara, described the experience as “a blur” as they waited for the results of the surgery. After four hours of worry and anxiety, they were overjoyed to learn the operation had been a success, and Koa was recovering well. The family were able to visit their tiny infant son on our hospital’s paediatric intensive care unit, and as the festive season was approaching, Koa was dressed in a little elf hat. Koa’s family were so happy to celebrate the moment with him. 

Koa spent 10 days in our hospital’s care before travelling back home to Northern Ireland. Unfortunately, Koa suffered from cholangitis, a serious and potentially life-threatening infection following his surgery, and had to visit his local hospital several times for treatment. 

Despite his early struggles, Koa continues to do well. He will need a liver transplant in the future, and his generous-hearted dad has already put himself down as a potential living donor. 

Baby Koa continues to do well

Sean and Ciara wanted to give back to the hospital that had taken such good care of their son. Sean was already planning to run the Belfast City Marathon as part of a relay team and the family decided they wanted to raise funds for sick kids. Sean’s fellow runners were only too happy to join “Team Koa” and by the time race day came, 23 runners had signed up and were raring to go. 

The couple were thrilled to raise over £6,000 for our charity, with friends, family and the local community all chipping on behalf of baby Koa. Race day itself was especially poignant, as Sean received some sad news of a personal loss the day before.  

The race was hard work but Sean and his fellow relay runners reached their goal feeling full of emotion. While Koa wasn’t able to be there on the day, Sean’s heart was lifted by the sight of so many people wearing “Team Koa” t-shirts, and the knowledge that the team’s collective efforts would make a difference to poorly children like his son. 

Sean Arbuckle ran the marathon as part of a 23-person relay team

Sean says: “It’s really daunting when you arrive on the ward with a poorly child. There are so many unknowns, but the doctors and nurses explained what would happen to our son in layman’s terms, and if we needed anything, they were always there to help. I have nothing but praise for them all. 

“It’s great to see our fundraising making a difference and raising awareness of a rare condition too. To any families in our situation, you’re not alone. There is support available.” 

Annie Eytle, Head of Public Fundraising at Birmingham Children’s Hospital Charity, said: “Koa and his family have been through truly tough times, but their strength and resilience has shone through. We’re so grateful to Sean and “Team Koa” for showing such generous spirit for our hospital, which will make a real difference to brave patients on our Liver Ward.”