Michael and Penny Henry are making a heartfelt appeal to Health Minister Jennifer Carroll MacNeill, desperately seeking intervention to save their son’s life.

Their 17-year-old son, Mikey, suffers from a rare neurological disorder combined with scoliosis. Tragically, his spinal curvature has escalated to nearly three times the limit considered manageable for surgical intervention.

Typically, surgery is most effective when the spinal curvature does not exceed 45 degrees. However, Mikey, a Mayo teenager, faces a daunting reality with his spine curving to a severe 130 degrees.

This weekend, the Henrys expressed their deep concern, fearing that without the minister’s intervention, their son might endure unbearable suffering.

In an emotional statement, Mikey’s father shared, “It was never communicated to us that Mikey would be beyond surgical help, which is why we are fighting so hard.”

Through tears, his dad revealed: ‘It was never said to us directly that Mikey would be inoperable, that’s why we’re fighting so hard.

‘If Mikey doesn’t get surgery, there wouldn’t be many more years. His lungs will be crushed. What do we do? Do we just sit here and let it happen, or do we try and fix it? It’s a nightmare.’

The Mayo teenager’s mother continued: ‘We are worried. Jennifer Carroll MacNeill has the power to change things. Only she can do it… we can’t wait any longer.’

Mikey with his mother Penny in their home in Moygownagh, near Ballina in Co. Mayo

Mikey lives with his parents and two younger sisters in the village of Moygownagh outside Ballina.

His mother and father decided to issue their appeal after it emerged last week the number of children on waiting lists for spine-straightening surgery has not changed dramatically, despite the Government allocating more money.

Mikey was a patient at Children’s Health Ireland (CHI) for many years, and during this time did not have spine-straightening surgery.

He will turn 18 later this month and as a result, is regarded as having ‘aged out’ of the CHI system.

His medical needs are complex, and he is unable to travel abroad by plane as his lungs are so damaged.

But he would be able to sustain a helicopter trip to the UK at lower altitude. And, say his parents, he could also get there by ferry.

Mikey was a patient at Children’s Health Ireland (CHI) for many years, and during this time did not have spine-straightening surgery

Despite contracts awarded to London’s Great Ormond Street and New York’s Morgan Stanley hospitals, only 19 children have travelled from Ireland abroad for spine-straightening surgery since January of 2024.

But Mikey Henry was not among them. And his parents believe there are other children like him, who have missed the opportunity to get life-changing and lifesaving surgery, because their medical needs are so complicated.

Mikey’s dad said: ‘We are a minority of a minority, that’s why he has been left behind.

‘If it was me I could go abroad for treatment under the Treatment Abroad Scheme, and I could get treatment under the National Treatment Purchase Fund.

‘But Mikey can’t fly in an airplane. He could fly in a helicopter or he could go in an ambulance and onto a ferry.

‘He is no longer a child, so he is out of the CHI. We want Jennifer Carroll MacNeill to bring in a scheme so that we could go to someone in the Department of Health or the HSE and their job would be to source a hospital for each individual’s need.‘

Mikey is an Irish citizen and the minister has the power to do this with a stroke of a pen.’

According to the most recent figures, the total number of children awaiting surgery has not changed, with 241 in February 2025, and exactly the same 12 months later.

And an analysis shows surgical activity declined by 22 per cent, from 87 cases in February 2025 to 68 in the same month this year.

The Henrys are calling on Jennifer Carroll MacNeill to bring in a scheme where they ‘could go to someone in the Department of Health or the HSE and their job would be to source a hospital for each individual’s need’

Yet both CHI and the health minister insisted this week things had improved for children waiting for spine-straightening surgery.

However, this weekend, mother of three Máirin Kelly queried these figures’ credibility. Her daughter Roxanne will travel to America next month for surgery.

The seven-year-old from Carlow has a rare condition which stiffened her limbs. 

Last year, friends and relatives organised a fundraising campaign for a life-altering procedure at a Florida hospital.

However the schoolgirl also has scoliosis, with her spine’s curvature already at nearly twice that for the best surgical outcome.

Máirin Kelly with her daughter Roxanne, who will travel to America next month for surgery

But Ms Kelly says her daughter is not on any list: ‘In May of 2022 the curvature of Roxanne’s spine was 34 per cent, in 2023 it was 46 per cent and the last X-ray showed it at 80 per cent – but she was not put on a surgical waiting list.

‘So our only option is to go back to America. If we didn’t do this, Roxanne would be left lying down for life… or doing nothing at all.

‘If she is not on a waiting list, how many other children [like her] are out there also not on a waiting list?

‘The only thing we can do is [fundraise] and take things into our own hands. It makes no sense.’

In a statement to the Irish Mail on Sunday, the Department of Health said: ‘The Minister understands the challenges families have faced in relation to paediatric orthopaedic services, in particular spinal services, and is actively driving efforts to address them.

‘An additional €30million has been allocated to help tackle spinal waiting lists. Several initiatives are underway to help improve access to services.’

It added: ‘As of end of February 2026, 92.1 per cent of patients waiting for inpatient procedures were within the 12-month Sláintecare target, a 3.5 per cent improvement compared to February 2025.’