For people living with Friedreich’s Ataxia in Ireland: the approval of Skyclarys, the first treatment shown to slow the progression of the condition, this news is life-changing. It was a victory hard won by patients, families and campaigners who refused to accept that Irish sufferers should be left behind. When I heard the news, a tear rolled down my cheek.

Friedreich’s Ataxia is a rare, genetic disorder causing progressive nervous system damage and for a long time, the diagnosis came with little hope – there was no cure and no treatment. This was the reality that faced my uncle Jim and aunt Hilary when my cousin Kate was diagnosed in 1996. Kate was just 10 years old and after many years in which her mobility, speech and muscle strength deteriorated, she sadly passed away from the condition when she was 31. It was her heart that gave up in the end but she never lost her sense of humour.

In 2023, there was a glimmer of hope for patients with Friedreich’s Ataxia when the omaveloxolone drug – known as Skyclarys – was approved in the US and then in Europe a year later. It couldn’t reverse the effects of the condition, but the evidence showed that it could pause or slow down the progression – it helps people maintain their strength, their balance and coordination, essentially their quality of life.

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But as many readers know, this drug, while available in countries like Germany, Spain, Italy, Czechia and Greece, was not approved for use in Ireland.

Can you imagine living with this condition every day, watching your body slowly fail you, knowing there was something that could be done but it wasn’t available? Can you imagine being a parent and receiving that diagnosis for your child and not being able to access the medication they need? Knowing that, with each passing day as the condition progressed, there was a drug out there but red tape was holding things up.

This is what motivated people like Emily Felix, Aoife Gavin and Niamh Ní Hoireabhaird to speak out and tell their stories. It provoked parents like Craig Coady and Jessie Abbey to plead with Government on behalf of their children. Their words were stark and honest. As Emily Felix told Irish Country Living in June, “We’ve just been waiting and declining in every shape and every form. All our abilities are being lost progressively and we’re losing hope.”

Kate was just 10 years old and after many years in which her mobility, speech and muscle strength deteriorated, she sadly passed away from the condition when she was 31. It was her heart that gave up in the end but she never lost her sense of humour

This honesty, this pure plea for life, garnered support. There were marches and sit-outs and this campaign really showed the power of the people – but equally, the Friedreich’s Ataxia community should never have had to go to such lengths to get a drug that should have been approved in the first place. Campaigners conducted countless media interviews, and all that campaigning took a huge toll, especially given the health impacts of the condition. It makes their determination, honesty and strength even more admirable.

As I watched people like Emily Felix speak her truth, I often thought of Kate. She too would have been a driving force of this campaign, she would have made her voice heard. When the news came last week that the drug was approved, I typed out messages to my family – and I guess the word that captured the emotion was bittersweet.

There was such happiness and relief for all the patients impacted by this condition, but also sadness that this all came too late for Kate and the many other sufferers who died before this drug was approved.

They will always be remembered.