Heartbreaking Plea: Parents Beg Minister to Save Son from 'Agonising Death'

Distraught parents Michael and Penny Henry are urgently appealing to Health Minister Jennifer Carroll MacNeill to save the life of their 17-year-old son, Mikey. Mikey suffers from a rare neurological condition and severe scoliosis, with his spine curvature reaching an alarming 130 degrees. This is significantly worse than the 45 degrees considered optimal for successful surgery, leading his parents to fear he will die in agony if intervention is not swift. His father emphasized their fight, stating that Mikey's lungs will be crushed without surgery, making the situation a 'nightmare'.
Mikey, who lives with his family in Moygownagh, Co. Mayo, is about to turn 18, meaning he will 'age out' of the Children’s Health Ireland (CHI) system. Despite having been a patient at CHI for many years, he never received spine-straightening surgery. His complex medical needs, particularly damaged lungs, prevent him from traveling abroad by plane, though he could endure a lower-altitude helicopter trip or a ferry journey.
The Henrys' appeal comes amidst concerns that the number of children on waiting lists for spine-straightening surgery has not dramatically improved, despite increased government funding. Since January 2024, only 19 children have traveled abroad for such surgeries under contracts with hospitals like London's Great Ormond Street and New York's Morgan Stanley, and Mikey was not among them. His parents believe many children with complex needs, like Mikey, are being left behind. They are advocating for Minister Carroll MacNeill to implement a scheme allowing families to work with a dedicated individual in the Department of Health or HSE to source a suitable hospital for each child's specific requirements, especially for those unable to use standard travel methods or who have aged out of the pediatric system.
Official figures show the total number of children awaiting surgery remained unchanged at 241 in February 2025 compared to the previous year, with surgical activity declining by 22 percent. Despite this, both CHI and the health minister have asserted that improvements have been made for children awaiting spinal surgery.
Máirin Kelly, a mother of three, has questioned the credibility of these figures. Her seven-year-old daughter, Roxanne from Carlow, who has a rare condition stiffening her limbs and scoliosis with an 80 percent spinal curvature, is not on any surgical waiting list. Roxanne is set to travel to America next month for surgery, funded by friends and family. Ms. Kelly highlights that if Roxanne isn't on a list, many other children might also be uncounted, forcing families to resort to fundraising and private solutions. The Department of Health stated that the Minister understands the challenges and is actively addressing them, citing an additional €30 million allocated to tackle spinal waiting lists and noting a 3.5 percent improvement in patients meeting the 12-month Sláintecare target by February 2026 compared to the previous year.
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