TWO more Donegal children have the same life-threatening condition as young Aaron Lagan – and all are in a “race against time”, health chiefs have been warned.
Donegal TD Pearse Doherty issued the warning to the Health Service Executive in Dail Eireann yesterday (Wednesday) as he called for the children to receive a new drug that slows their terminal disease.
The Donegal News last week reported how nine-year-old Aaron, from Laghey, has heartbreaking illness Duchenne muscular dystrophy (DMD), an incurable condition that and can lead to scoliosis but also causes his muscles, including his heart, to slowly stop working.
Miracle drug Givinostat was approved by the European Medicines Agency (EMA) last June – but it has not been rolled out by the HSE nearly a year later amid a cost-benefit analysis review.
Deputy Doherty has now revealed in the Dail that young brothers Diarmuid and Nathan O’Sullivan, from Ballybofey, also have the severe, genetic disease DMD.
Aaron Langan’s dad Dermot told the Donegal News that the O’Sullivan family’s situation is “heartbreaking”.
He said: “The new drug [Givinostat] has been approved for one of the boys so their parents can only give it to one of their sons and not the other. It’s heartbreaking.”
Deputy Doherty said in the Dail: “Diarmuid O’Sullivan, aged 10, is from my own county of Donegal. 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. These are parents who are in a race against time.
“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 [Jennifer Carroll MacNeill] 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.”
Pearse Doherty speaking previously in the Dáil. Image: Oireachtas TV.
Neuromuscular disorder DMD risks the boys’ entire mobility – and their lives.
When Aaron’s protested at the Dail last summer to highlight their boy’s case, he was still able to walk.
DMD has weakened his lower body so much that he now needs a wheelchair full-time, but the new drug would stop DMD overtaking his upper body as well.
However, his family fears he will miss out because the HSE remains locked in commercial negotiations with the drug’s manufacturer about cost of the drug.
Givinostat is only licensed for those who are able to walk.
Aaron’s dad Dermot told the Donegal News: “We know the [O’Sullivan] family. It’s heartbreaking for them.
“To go to their fridge and only be able to give the medicine to one boy and not the other is just heartbreaking.”
Devoted dad Dermot undertook a climb of Errigal and a 100-km cycle in August 2024 to raise funds for Aaron’s care.
He said last night: “We are happy that Pearse Doherty is taking up Aaron’s case.
“But we’ve heard nothing about what’s happening between the HSE and the drug’s manufacturer.
“We were told the HSE was given a price on May 8. We’re nearly a week further on, but we are still waiting. What is the delay?
“There seems to be no urgency. We feel let down by the Government and the HSE. We do not have time.
“We went to Leinster House last summer and we were told, ‘Leave it with us’. They said they’d help.
“We wish we didn’t leave it with them. Aaron was still able to walk at the time. He’s now in a wheelchair.”
He added: “We are afraid that Aaron will miss out because children who get it must be able to walk, so some doctor might say he is no longer eligible.
“It’s ridiculous, especially when you think that it is all because of money.”
There are 150 children in Ireland with Duchenne muscular dystrophy (DMD).
Aaron Langan, form Laghey, has Duchenne muscular dystrophy (DMD).
When the EMA ruled that Givinostat is a treatment for children who are at least six years old, a parents’ group protested outside the Dail to demand that the HSE cover the cost of the miracle drug.
Figures have put the cost of Givinostat at between €92,000 and €348,000 per child, depending on the patient’s weight.
A health report the estimated that costs of the drug for the HSE could run to between €26m and €58m over five years.
Aaron’s loving mum Sinead explained how Givinostat works and said: “The drug stops the inflammation in the muscles, which keeps mobility for longer.
“We know that Givinostat is not going to make Aaron walk again or reverse what damage has been done. But it can help his upper body.”
She said Aaron, who was diagnosed at just a year-and-a-half, is a “happy-go-lucky little boy and full of life”.
Sinead added: “We have watched clinical trial since Aaron was 18 months old. This drug is the first time that something is within our reach – but we cannot reach it. It is just heartbreaking.”