The grandfather of Dáithí Mac Gabhann is fundraising to give his family a summer to remember after the family announced the devastating news that he has been suspended from the transplant list.
Martin Smith said he hopes to send the six-year-old and his family to Disneyland Paris along with a number of other activities over the summer so that the family can make memories.
Speaking to Belfast Live, he said that Dáithí's condition is still stable but that he will require an operation in the hope of rectifying the issues which have seen him suspended from the transplant list.
Read more: Dáithí Mac Gabhann 'temporarily suspended' from transplant list
"We didn't get the news that we wanted to hear when he was at a check up in Newcastle and if he were to go through a transplant at the moment he wouldn't survive it," he said.
"Now we are at the stage where we have to go to Newcastle hopefully within the next couple of weeks so that the can do the operation that is needed and hopefully he can get back on the transplant list again.
"There is no guarantee that any operation will be a success so I have decided to set up this fund to give the family a summer to remember."
Martin told us while he is not expecting the worst, the news has come as a big blow to the family.
"What I am trying to do is to raise money to send them to Disneyland Paris and allow them to do other things with him that they haven't had the chance to do.
"This will allow them to make memories. This news has been really devastating and has been a kick in the teeth for all of us.
"Over the last six years Dáithí's dad has stopped working to make memories with him and I feel so sorry for Máirtín and Seph.
"They need to really do these things now while they can in case they don't get the opportunity which is a sad situation."
Dáithí Mac Gabhann was born with hypoplastic left heart syndrome, meaning the left side of his heart did not form correctly.
The Donate4Dáithi campaign has been instrumental in changing the organ donation law in Northern Ireland which came into affect on 1st June.
Last weekend, the Ballymurphy child was awarded the Freedom of the City at a special ceremony on the lawns of Belfast City Hall.
To donate to the fund to send Dáithí and his family to Disneyland Paris, click here.
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