Caoimhin Adams: family hoping Newtownabbey boy's brave battle will help others

Caoimhin Adams passed away at the age of eight after receiving an official diagnosis of ROHHAD Syndrome (Rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation) three months previously.

The Bawnmore resident was the first person on the island of Ireland to be diagnosed with the rare condition, which affects an estimated 100 young people globally.

Caoimhin’s mum Caitriona spoke to the Newtownabbey Times in a bid to raise awareness of the condition, one-year on from her son’s passing.

Caitriona said: “Caoimhin’s weight started to increase in 2021, but his diet and exercise hadn’t changed and we couldn’t understand it. In June he started to develop breathing difficulties and tests showed his brainwaves were similar to someone in a coma, even though he was sitting awake.

"The medics were baffled. His heart rate was coming in the 150s, similar to when a child was doing exercise, but Caoimhin was sitting playing on his tablet.

"We had been told by a number of health professionals in October 2022 that it may have been ROHHAD Syndrome, but more tests needed to be carried out and it wasn’t until April 2023 that it was confirmed. Young people with the condition usually have a life expectancy of around 14, but Caoimhin’s came so quickly that we were told he would need palliative care.

"He got home from the Royal Victoria Hospital for Sick Children on June 18 and was surrounded by his sister Aimee, brothers Dylan and Aodhan and his dad Kieran and me.

"We had a family fun day at our home on July 8 and it was really well attended from people right across the community coming together. We had representatives from the PSNI, NIFRS and NIAS there and politicians.

"Caoimhin passed away peacefully the following day (July 9) and his funeral was held at St Bernard’s on July 11, with many people wearing orange, the colour symbolising ROHHAD, in his memory.”

To mark the Newtownabbey boy’s anniversary and to highlight ROHHAD, a special ceremony was staged at Belfast City Hall on Tuesday, July 9.

Caitriona added: “It was an exceptional night. We had people from all backgrounds there, as well as people from the emergency services coming out to back us. There were hundreds in attendance, which is a measure of the support we have received.

“ROHHAD is an ultra rare condition and more awareness needs to be raised about it. I’d like to thank the medical professionals at the RVH- they were exceptional when they were looking after Caoimhin. They helped us as a family come to terms with such a unique condition.

"Hopefully lessons can be learned from his treatment that could help other young people who may go on to be diagnosed with ROHHAD. Caoimhin has been able to inspire their knowledge of the condition.

“Thanks also goes to Antrim and Newtownabbey Council. The civic buildings were lit up orange across the borough on July 9 to help raise awareness of ROHHAD and mark Caoimhin’s anniversary.”