Dáithí's family hopeful despite transplant setback
- Published
Dáithí Mac Gabhann's family was told a transplant would be too high risk at present
The father of Dáithí Mac Gabhann has said he is "devastated but hopeful" after his son was temporarily suspended from the heart transplant list.
Earlier this month, the six-year-old organ donation campaigner became the youngest ever person to be awarded the freedom of Belfast.
The ceremony took place just days after Dáithí's Law came into effect.
The bill means most adults will be considered potential donors unless they opt-out or are in an excluded group.
The law brings Northern Ireland into line with the rest of the UK.
Explaining why Dáithí has been taken off the transplant list, Máirtín Mac Gabhann told BBC News NI: "If the gift of a new heart was to come about and was suitable for Dáithí, the transplant would be too high risk because of a few issues that he has going on.
"Dáithí has collateral blood vessels growing over time and if he was to get a transplant, then he wouldn't make it."
'We have hope'
Mr Mac Gabhann said the medical team in Newcastle had taken the decision to suspend him from the list and "bring him over in the next few weeks or months to try to get rid of these collateral vessels" so he could be put back on it.
"It's not good news, it's far from good news but we have hope," he continued.
"When Dáithí was born he was given under a 10% chance of survival in his first few weeks but he's now six years old, he's a freeman of Belfast and he has his own law.
"So if we can look back on those dark days, they will surely help us through these dark days."
Dáithí became the youngest person to be awarded the freedom of Belfast
Dáithí's family decided to keep the news private for a time so as not to overshadow the celebrations.
"Although we were dealing with this devastating news we didn't want to take any attention away from organ donation because we still hope Dáithí's life will be saved by organ donation," Mr Mac Gabhann said.
"The longer Dáithí stays on this list, the more chance there is of these kinds of problems arising. We need to keep raising awareness about paediatric organ donation and keep that conversation going.
"It's been such a difficult few weeks for us as well as being an amazing few weeks for us. Our Dáithí receiving the freedom of the city and his own law coming into effect - it's been incredible.
"I'm just so proud of him. Every day we fall more in love with our Dáithí and that's why it was that extra bit devastating when we did get that phone call because life without our Dáithí is unimaginable.
"Dáithí in himself is stable. He is using a wheelchair at the minute, he is on home oxygen but in general he is doing okay.
"That's why we want to make every second count this summer and create the most precious of memories.
"We'll not waste one single second this summer because while he is stable, we'll try to cram every single memory we can, just in case."
Dáithí Mac Gabhann and his father Máirtín visited Stormont's to celebrate as the law took effect
Mr Mac Gabhann said his family is now concentrating on getting Dáithí back on the transplant list, with the hope of getting the new heart he has been waiting five years for.
The family also plans to continue its campaign work raising awareness about paediatric organ donation.
Mr Mac Gabhann said his son starts every day "with a smile on his face".
"Even yesterday he had his sports day in school and he was already talking last night about when he has his new heart next year, he'll be able to compete in all the races," he explained.
"That's what drives us on - thinking about the future when Dáithí hopefully does have his new heart when he's back on the list," he said.
"The power that hope gives you is incredible. And even if it's a little hope, well just hold on to it tightly."