Sufferers of cruel neurological condition that sees the body shut down - as well as TWO sets of heartbroken parents who've already lost a son each to the disease and  now fight for their other sons' lives - the State to act 'before it's too late'

Published: 15:59, 22 July 2026 | Updated: 16:01, 22 July 2026 When Emily Felix was 12, she thought the biggest thing she had to worry about was starting secondary school.  Instead, after months of losing her balance and falling over, she was told she had Friedreich’s ataxia (FA), a rare inherited neurological condition that would drastically change the course of her life. Growing up in Gowran, Co. Kilkenny, Emily loved sport and spent every spare minute with her younger sister Anna.  Then came the diagnosis that changed everything. She went home, typed the condition into Google and found photographs of people on ventilators.  Terrified, she remembers telling her friends she did not think she would live to see her 30th birthday. Emily Felix suffers from Friedreich's ataxia and wants the State to help fund treatment. Photo: Tom Honan Today, aged 28, Emily uses a wheelchair, and needs help getting out of bed, preparing meals and getting ready for the day. This week, with the news that the HSE Drugs Group has deferred a decision to recommend public reimbursement of Skyclarys, a lifesaving drug that might slow the progression of the devastating condition, the terror she felt as a 12-year-old has come back full force. ‘We need this drug before it’s too late,’ she says. ‘What price do they put on our lives? ‘They’re not listening. There are 200 people here in Ireland literally begging for our lives.’ Her plea comes after Emily and other people with FA and their loved ones gathered outside the Dáil on Tuesday, anxiously awaiting a decision from the HSE Drugs Group to reimburse the costly omaveloxolone treatment that is their only hope. But, more than 700 days since the HSE first began assessing the drug, the application was referred to the Rare Diseases Technology Review Committee for further expert assessment. With the Dáil due to rise for the summer recess, this is more precious time lost – and this progressive disease does not wait, as Emily knows only too well. So too do parents such as Craig and Della Coady from Cork, who lost their 13-year-old son Rory to sudden heart failure caused by the disease. Their other son, 16-year-old Paudie, also has the condition. Margaret and Padraig Coyne from Galway lost their six-year-old son Dara in December 2022 from the cruel disease and their other son Sean, at 16, also has FA and has now lost his ability to walk and suffers from cardiomyopathy. ‘Politicans can go and take their summer holiday but we don’t get a break from this,’ says Emily. ‘Time is running out for many of us.’ Emily with her sister Anna at Anna's graduation Mere months after receiving her bleak diagnosis, Emily needed a special needs assistant to help carry her schoolbag and get from class to class. Soon afterwards, she was using a walking frame. By the age of 15 she relied on a wheelchair. ‘The girls were really lovely to me and very supportive,’ Emily recalls of her schoolmates. ‘But I was always the girl with the condition.’ As the disease progressed, so too did the future she thought she would have. School trips abroad became impossible and PE disappeared from her timetable. Discos and many of the other ordinary rites of passage that shape adolescence slipped away as hospital appointments, mobility aids and adapting to a body that was shutting down became part of everyday life. ‘It shattered my confidence,’ she says. ‘I never really thought about romantic relationships because I thought, who would want to take that on? I haven’t thought about that part of my life for a very long time. I’m just so focused on trying to slow the pace of this.’ Emily and Anna when they were younger, not long after Emily's diagnosis Amid the devastation, one conversation stayed with Emily throughout. Following her diagnosis, Professor King at Temple Street explained that while FA would gradually take away her physical abilities, it would never diminish her intellect. ‘That stuck with me all my life,’ Emily says. ‘I was determined to make the most of my brain and my intellect. But it’s a blessing and a curse because physically you are shutting down, but you remain acutely aware of what is happening to you and what’s in store.’ She is currently training to become a solicitor while working in banking yet determination alone cannot stop the disease from progressing. Earlier this year, Emily, whose speech is noticably strained, spent hours banking her voice, recording it into specialist software in preparation for the day she may no longer be able to speak.  She now needs help getting out of bed, preparing meals, getting dressed and back into bed at night. She drinks through a straw and knows the day may come when she will need thickened fluids, a hoist and eventually a ventilator to breathe. Anna and Emily in Rome this summer Despite living with mild heart failure – a fatal complication of the condition is cardiomyopathy – she still goes to the gym twice a week because maintaining as much strength and independence as possible remains important to her.  She also loves travelling with her younger sister Anna, who she remains exceptionally close to. The siblings recently returned from Rome, although this time Anna’s boyfriend travelled with them too because, Emily says, ‘it’s just not possible for the two of us any more’. Despite everything FA has taken from her, Emily refuses to stop planning for the future, wanting to travel through Europe, to be there when Anna gets married, qualify as a solicitor and use her own experiences to help others. ‘I want to be excited about my future and not dread it, and similarly, I want my sister to not have to dread hers and be centred around my care,’ she says, likening FA to motor neuron disease, albeit with slower progression. ‘We don’t get as much awareness for FA, I wish we did,’ says Emily, who also reveals that it can run in families and emerge at any age, tending to be more severe the younger the diagnosis. ‘It’s not going away, and it doesn’t discriminate. I have met people as young as five and then people with late onset into their 60s with it.’ For decades, those living with FA were told there was nothing that could be done. Then, in 2024, hope arrived.  Skyclarys became the first medicine authorised in Europe specifically for FA. It is not a cure and it cannot reverse damage already caused by the disease.  What it can do is slow its relentless progression, helping people hold on to their mobility, independence and quality of life for longer. Results from the long-term MOXIe Open-Label Extension study found patients taking Skyclarys experienced around a 55 per cent reduction in disease progression over three years compared with the expected natural course of the disease. Yet despite the drug receiving approval from the European Medicines Agency, Irish patients remain unable to access it through our health system. Without reimbursement, treatment is estimated to cost around €300,000 per person each year, placing it far beyond the reach of almost every family. ‘This is what I can’t understand – the drug has been authorised, people all over Europe and the States are availing of it, and it’s working,’ says Emily. ‘We don’t need more research – I can’t understand why Ireland is lagging behind. ‘The delays are so unnecessary and needless. This should be ready to go and the fact that it’s not is negligence for Irish citizens. It’s so insulting.’ Aoife Quinn remembers counting years off her fingers on her birthdays For Aoife Quinn from Galway – who is 23 and was diagnosed five years ago – access to Skyclarys could allow her to keep her voice and stay out of a wheelchair. The 23-year-old from Galway, who began her own campaign to make the drug available for HSE reimbursement at the start of the year, says access to the potentially life-saving drug is only the beginning of what’s needed for the FA community in Ireland. ‘I was given a Friedreich’s ataxia diagnosis at age 18 with no hope,’ she recalls today. ‘Myself and my parents were told there was no cure, no treatment and essentially life as you know it will be over in a matter of years. ‘Getting the drug is only the first issue. I will be continuing to fight for multi-disciplinary treatment for sufferers here – counselling, physiotherapy, speech therapy and rehab. ‘There is no proper treatment plan in place in Ireland, we have just been completely sidelined. Any help or support I’ve gotten I’ve had to fight tooth and nail for. ‘I remember leaving Galway hospital on the day of my diagnosis convinced I’d be dead before the age of 30 and confined to a wheelchair way before that. We weren’t even offered counselling as a family.’ She heartbreakingly recalls the devastating psychological impact it has had on her. ‘On my birthday for years after, I would automatically count the years off my fingers,’ she says. ‘I didn’t even know if I wanted to go to college as I wondered what was the point.’ Aoife went on to study science and is now working four days a week in a credit union. She does not need a wheelchair yet but says that her balance and co-ordination issues have continued to progress and show no signs of slowing. ‘I am still walking thank god, I will do anything to remain on my feet,’ she says. ‘Recently I got a service dog and he helps me so much. But it’s more and more difficult and my voice is getting weaker. ‘I have told my boyfriend that if it’s too much he doesn’t have to stay,’ says Aoife, revealing the toll FA takes on relationships. ‘But he is so good to me and knows I didn’t choose this life. ‘I’m in touch with a guy in America with FA and similar mobility issues as me who is on Skyclarys and it has changed his ability to walk. They are working on a drug in the US that will cure this condition. It might take years but if I have something to slow my progression, it might not be too late for me.’ Last December, the National Centre for Pharmacoeconomics (NCPE) issued a non-recommendation on reimbursement, citing uncertainty around the drug’s clinical benefits and an estimated annual budget impact of approximately €200 million.  In June, the NCPE’s clinical director Michael Barry told RTÉ Radio 1’s This Week that the medicines were ‘very expensive’, that ‘none of them improved overall survival’ and concluded that ‘early access to drugs that don’t work very well is not a very good way of spending taxpayers’ money in my view’. More than 200 people protested outside the Dail on Tuesday Maureen Sweeney, chairperson of Ataxia Ireland, believes the debate has become too focused on the price of the medicine and not enough on the long-term cost of the disease itself. She points out that some people in Ireland living with FA are spending their 30s and 40s in nursing homes because of the lack of dedicated neurological rehabilitation services for progressive conditions. ‘We urgently need access to treatments that can slow the progression of ataxia because, for many, every day without progress means losing more mobility, more independence and more quality of life,’ she says. When contacted, the HSE said the Drugs Group had not recommended reimbursement of Skyclarys at its meeting on July 14 and had instead referred the application to the Rare Diseases Technology Review Committee for further expert input. It said the RDTRC, whose membership includes consultants with expertise in rare diseases and patient representatives, provides additional advice where the Drugs Group ‘is not in a position to progress a recommendation supportive of reimbursement’. The HSE said the referral was intended to ensure ‘every opportunity is taken to fully consider the medicine’ against the statutory criteria set out in the Health (Pricing and Supply of Medical Goods) Act 2013, including patient need and clinical benefit. It added that it has begun convening the committee and is aiming to complete the review within one month, subject to the timely availability of clinical experts. But Maureen says that offers little reassurance to families who have already spent years waiting. ‘The one-month timeline is not good enough,’ she says. ‘They’ve had over 700 days to establish this process and, by the time any recommendation goes through Government and the necessary consultations, we’ll be lucky if we see movement before Christmas.’ Emily and Anna are very close but Emily fears for the future As Emily, Aoife and almost 200 others living with FA in Ireland continue to wait - two patient advocacy groups are meeting with the Rare Disease Technical Review Committee to try to speed up the process - their hope is that a final decision comes while there is still time for Skyclarys to make the difference they believe it can. ‘Before we started campaigning earlier this year, no one knew what Friedreich’s ataxia was or what the condition meant,’ says Emily.  ‘This is hereditary so it’s not going away in this country, I just hope future generations have it easier than we have. Nobody in Ireland – one of Europe’s wealthiest countries – with ataxia should have to fight for the treatment and care they deserve.’ Sorry we are not currently accepting comments on this article.