The family of a Belfast child who had been on the heart transplant list for five years say their child has been “temporarily removed” from the list.
Daithi Mac Gavan was born with Hypoplastic Left Heart Syndrome, meaning the left side of his heart didn't form correctly, and the six-year-old has been actively campaigning for changes to organ donation laws in Northern Ireland, which came into force on 1 June.
The Organ and Tissue Donation (Deemed Consent) Act, also known as the Dicey Act after the Ballymurphy child, changes the way consent to donation is given and came into force on Thursday. The majority of adults in Northern Ireland are now considered potential organ donors.
read more: Six-year-old Daithi released from Belfast
On Wednesday, a statement was released via Donate 4 Dáithí's social pages: “We have news to share with you all. We recently received the shocking information that Dáithí has been temporarily removed from the transplant list due to some unresolved issues. While it feels like a major setback, we refuse to let this define us. We firmly believe that setbacks are simply preparations for a comeback.”
“At this point Daithi's only hope of survival is a heart transplant.
“So what's our plan now? We're not giving up and his team in Newcastle are determined to find a solution. Daithi will need to undergo another operation to address these challenges and regain his place on the transplant list.”
“Throughout this journey, we have witnessed the immense power of love, support and the amazing community that surrounds us. Together we have achieved incredible milestones, including Daithi's Law.”
“But now we've decided to embrace the summer with an open heart and create unforgettable memories. We're going to cherish each and every day and make this the most magical summer ever. We want to fill Daithi's life with joy, love and positivity. We hope that by the end of this summer he'll be back on the transplant list and in the same stable condition as he is now.”
“We would like to express our sincere gratitude to each and every one of you who supported us on this difficult journey. Your encouragement and solidarity got us through difficult times.”
“Remember, we may be down right now, but we are never defeated. We look forward to a summer of love, joy and unyielding determination.”
“If there's anything Daithi has taught us on this journey, it's that miracles do happen.”
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