Eleven-year-old Cork hero Adam Terry has told The Echo he is very glad he spoke out about his four years waiting for life-altering scoliosis surgery.
Adam, who is from Whitechurch, became something of a household name last year when he went on national radio to tell his story.
Adam was born with a rare condition called Marfan syndrome, which affects the connective tissues, and when he told his story he had been waiting four years for scoliosis surgery to correct the curvature of his spine.
Adam spoke to Cork-based journalist Brian O’Connell on Today with Claire Byrne on RTÉ Radio 1 about the constant pain he was in, describing it as “almost paralysing”.
Scoliosis causes a curvature of the spine into a “c” or “s” shape, and affects some 3% of the population.
Four years after being told he needed an operation, Adam’s chest cavity was touching his pelvis and causing him agony.
“I have moments now and then where I start crying . . . every day I have less abilities,” Adam said. “Nobody is coming out to find me in the lost and found.
After Adam told his story, his family received phone calls from Taoiseach Micheál Martin and Health Minister Stephen Donnelly, and a public apology from the then-head of the HSE, Paul Reid.
Adam received his operation weeks after his interview, at the end of October, 2021, almost exactly a year ago.
He has had a hard year since, suffering sepsis eight weeks after his surgery, but his mother says he is now doing well.
Last week, Brian O’Connell was awarded a gold prize for IMRO story of the year for his interview with Adam, and Adam could not be happier.
“It’s a huge deal,” Adam said of his friend’s award.
Adam’s mother, Christine, said the award meant a lot to her family.
“I’m so proud of my son for speaking out and it’s not an easy thing to do, and very proud of Brian O’Connell for covering our story,” she said.
“At the time we were worried about speaking out but we feel it came to the point where we had to.
“We feel that it motivated others to speak out to, especially other children. Adam helped give them a voice.
“We are happy to hear about the award as it gives us a chance to raise awareness about the ongoing situation around scoliosis lists,” Ms Terry said.
“Brian handled this story with such dignity and compassion that we felt safe to open up to Brian … we’re so thankful for all he has done.” Brian O’Connell’s journalistic career began while he was studying for a Master’s in history in UCC, with a summer job working in the Irish Examiner library, and the Clare native has gone on to win multiple awards for his work on RTÉ Radio 1 with Pat Kenny, Seán O’Rourke and now with Claire Byrne.
According to HSE figures, as of Monday 10 October, there are currently some 262 children awaiting scoliosis surgery in Ireland.
Claire Cahill, co-founder of the Scoliosis Advocacy Network, notes that NTPF figures show 7,408 children are currently waiting on a first appointment with an orthopaedic surgeon in Ireland, with 2,260 waiting more than 12 months. Those figures relate to all orthopaedic work, but spinal cases usually account for approximately 20%.
“Some children wait years for first assessment, which is the first barrier to care,” Ms Cahill said.
“Children may then face waits of years long for MRIs, which is another barrier, and this is all before they ever reach a surgery wait list - if surgery is required.
“Early diagnosis, early intervention and treatment would result in less need for surgery, improved outcomes and reduced risks to our children,” she said.