Figures from NHS Blood and Transplant (NHSBT) suggest fewer than five patients in Wales and England are currently using a Berlin heart, a device which can be used for several months prior to a transplant.
With only 2% of deceased organ donors in the UK being under 18, Macs’ family was also eager to raise awareness about the importance of organ donation.
“It’s not a nice subject to be discussing, but the more people who donate organs, they can help children like Macs lead a full and happy life,” said Dylan.
The two specialist hospitals in the UK where the specialist Berlin heart can be fitted are Great Ormond Street Hospital in London and the Great North Children’s Hospital in Newcastle.
The NHS Wales Joint Commissioning Committee (NWJCC) said it recognised the “difficult and stressful time this must be for Macs’ parents, family and friends”.
It said, while funding was available for patients who required highly specialised services, capacity was managed on a UK-wide basis, and access to treatment was determined through clinical assessment.
“We understand that the specialist teams involved in Macs’ case remain focused on supporting him to ensure he receives the care and treatment he needs.”