A south Donegal primary school have appealed for funding for life-saving treatment to be released as quickly as possible to help one of their pupils, whose family “are at breaking point.”
Nine-year-old Aaron Langan, a pupil at St Eunan’s NS in Laghey, was walking at Christmas and is now in a motorised wheelchair full-time, and is one of approximately 150 children in Ireland living with Duchenne Muscular Dystrophy (DMD).
DMD is termed a severe, progressive, genetic neuromuscular disorder characterised by muscle degeneration and weakness, primarily affecting young males. Caused by a lack of the protein dystrophin, it leads to rapid muscle wasting, typically resulting in wheelchair dependence and life-shortening respiratory or heart failure.
The school has said that a life-changing treatment was approved by the European Medicines Agency last year, but the Langan family are still awaiting HSE funding, despite assurances to the contrary last June at the Dáil.
“The drug will not cure him, but it will slow down the disease,” St Eunan’s NS said. “The family are at breaking point.
“Aaron isn’t just a pupil, he is the life and soul of our corridors. At just nine years old, his smile, his spirit, and his resilience define what our community is all about. But right now, our wonderful Aaron and his family are facing an incredibly difficult journey, and as a school family, we are wrapping our arms around them.
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“Every day is a race against a clock that shouldn’t be ticking so fast. For children like Aaron, ‘waiting’ isn’t just a delay; it’s the risk of losing muscle strength they can never get back.
The school has united in their push to ensure that Aaron’s treatment can be funded as a matter of urgency.
“We are more than just a school; we are Team Aaron,” they said. “We stand proudly and fiercely with the Langan family as they fight for the medical care Aaron deserves. No family should have to battle for a treatment that is already within reach, especially when time is the one thing they don’t have to spare. To the world, Aaron is a boy fighting a rare disease. To the St Eunan’s family, Aaron is our friend, our inspiration and the heart of our school.”
Sinn Féin TD Pearse Doherty has been in contact with Aaron’s parents Sinéad and Dermot and those of 10-year-old Diarmuid O’Sullivan from Ballybofey.
Deputy Doherty and Fianna Fáil TD Pat The Cope Gallagher raised the requirement for the drug Givinostat with the Minister for Health, Jennifer Carroll MacNeill.
“Givinostat was approved by the European Medicines Agency last June, so it’s nearly a year now and the HSE is still reviewing whether they are actually going to cover the cost of this drug for children across the state,” he Doherty said. “What makes the delays around Givinostat’s availability particularly distressing, Minister, and I’m sure you know this, is that it is only available to children who still have mobility.
“So these children are in a race against time and they are looking on as the HSE and the government drags its feet as they become seriously at risk of not having this life-changing support through this drug.
“The matter is particularly urgent for young Aaron. Aaron is a 9-year-old. His family are fearful that his mobility will be further impacted by this condition and that he will not be able to access this life-changing drug even if the HSE approves its reimbursement.
“Aaron’s mother and father were here last year in the Dáil pleading with the Government to get their act together to allow them access to this life-changing drug. At that time, Aaron was walking; today, he is in a wheelchair.
“This drug isn’t just a game-changer for Aaron, [but also for] young Diarmuid. His older brother Nathan was on a trial for Givinostat in Britain and is now able to live a fulfilling life. But Diarmuid is not able to have this drug.”
Minister Carroll MacNeill detailed the progress that has been made in providing the drug, but Deputy Doherty said that doesn’t cut it for families.
“These are parents who are in a race against time,” Deputy Doherty continued. “The case of Diarmuid is an example of this. Diarmuid’s mother spoke to me and she said: ‘Imagine, as a mother, opening the fridge every day and giving my eldest boy this life-changing medicine and not to my other little boy. Imagine the turmoil that this causes me day after day.
“She said that she met with the Minister for Health and a promise was made to allow compassionate access that would allow the drug to be fast-tracked for her child. She says that time is not on her side.
“Aaron’s case is the same. He was walking when they were pleading with the government last year. Now he is in a wheelchair. Minister, this isn’t good enough. I’m a parent of four young boys, I’d go through a wall for them. Government has to allow compassionate access immediately for these drugs.”
