Our brave boy Mikey is being left to deteriorate by State – he loves life and just wants to live but needs scoliosis op
Mikey Henry Benson, from
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Mikey uses his iPad to communicate
Credit: Collect
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His parents have told how he has been failed by the state
Credit: Collect
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The teen now requires oxygen due to pressure on his lungs
Credit: Collect
In 2022, at age 14, he was also diagnosed with
That condition has gotten worse over the past three years to the point that it has damaged his lungs and left him struggling to breathe on his own.
Mum Penny and dad Michael believe their son's scoliosis was not appropriately monitored as his curve continued to get worse, to the point where doctors now deem him a high risk for
An x-ray back in 2023 showed he had a curve of over 100 degrees and would require attention — but the family were given no date for a surgery or treatment.
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Last year, Mikey presented at his local hospital in Mayo with difficulty breathing and was taken to Crumlin hospital in
However, the family were left devastated when the pre-op tests showed the scoliosis curve had progressed so much that it was now damaging his lungs — making it dangerous to put him under for surgery.
Instead, Mikey was told that he would now require the assistance of oxygen every day and a bipap machine at night.
Penny said: 'Mikey was just left to deteriorate. We feel like he was not monitored and now nobody is willing to do the surgery because he is in a high risk category to operate.
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'He's on oxygen now every day and the bipap at night, and he will remain on them for the rest of his life, we're told.
Heartbreaking footage of Harvey Sherratt in pain amid scoliosis surgery wait hell
'It's been difficult because it is on top of everything else, and we feel, if his scoliosis had been addressed, it wouldn't have happened.'
The Irish Sun's
Mikey's family first contacted The Irish Sun last summer following the heart-breaking pre-op scan results.
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Penny and Michael were reluctant to go public with their story at the time and instead took their fight for care to the Dail.
In recent months, they met with local politicians, including
The family feel that Mikey is being left in limbo by the health service, with three appointments cancelled so far this year due to unforeseen circumstances, according to Penny.
Mikey's devastated parents now want their son to be sent to Great Ormond Street Hospital in
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SCOLIOSIS CRISIS
THE Irish Sun's 'Kids Can't Wait' campaign shines a spotlight on the crisis facing children in Ireland waiting for scoliosis treatment.
Scoliosis has become a national scandal within the Irish health system, with hundreds of children waiting months or even years for vital surgeries.
The campaign raises the voices of families who feel abandoned by the HSE and politicians, often forced to go public with heartbreaking stories in the hopes of getting help.
Many children like Mikey are left deteriorating while appointments are cancelled or care is deferred.
'Kids Can't Wait' is more than a slogan — it's a demand for dignity and systemic change.
Michael told The Irish Sun: 'We are Mikey's voice and I do know that he wants to live so bad.
'I think his wish would be just to live. He just loves life and he wants help and he wants someone to help him.
"Even though he hates hospitals, he is always accepting of help and he's so strong.
"Any time he has had to go into hospital he adapted to it so well. He knows he needs help to stay alive and now he needs that help.'
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Former Health Minister
More than a dozen children have been sent overseas for their operations through this pathway and Michael and Penny hope this can be used to get Mikey to London.
Penny said: 'He needs a full independent assessment in Great Ormond Street.
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'NO OTHER PLAN'
"The Department of Health and CHI are sending children over for surgery — so Mikey should be able to use that.
'The doctors here said they won't operate on Mikey and we have no other plan.
'Now he's 17, they are in the process of transferring him to adult services, and that is so frustrating to feel like we are being shipped from A to B.'
Mikey uses a wheelchair and is non-verbal, but communicates with his family and friends through the use of an iPad.
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He loves going to school at St Dymphna's in Ballina, where he thrives at maths and English.
Michael said: 'He is getting on brilliant. Only for that school, I don't know. I tell you, he loves school.
"He loves his buddies and the teachers and helpers.'
A CHI spokesperson said they cannot comment on individual patients.
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They added: 'Even if a family decides to make their story public, we are still bound by patient confidentiality.'
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Doctors will not operate on Mikey
Credit: Collect
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Stephen Donnelly launched a campaign sending kids for ops abroad last year
Credit: rian Lawless/PA Wire
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