KEALKILL woman Emma O’Shea said she can ‘see her future now’ after the HSE agreed to approve access to Skyclarys for patients living with Freidreich’s Ataxia (FA).

On Tuesday the HSE decided to fund the drug which has been approved by the European Medicines Agency in helping to slow the progression of the disease.

Emma (26), whose older brother Timmy died of FA in 2016 at the age of 29, was to the forefront of the campaing fighting for access to the drug for around 200 young people living with the condition.

Just last week she welcomed Taoiseach Micheál Martin into her home where she delivered an impassioned plea for him to reconsider the HSE’s position on reimbursing Skyclarys.

Reacting on Wednesday to news of the drug’s approval Emma said: ‘It’s hard to believe. The waiting is finally over.’ A packed meeting in Kealkill NS the previous week, where Emma went to school, showed the level of support for her.

Emma told The Southern Star: ‘I’m blown away with the support and love I have been receiving. To come and stand in the rain to support me and my family has me lost for words. I could feel the emotion from people.
‘I want to thank everyone for coming out and helping us through the last few months. Special thanks to Mary Burke, Margaret O’Mahony and Angela Kearney for organising [the public meeting].’

The HSE agreed to fund Skyclarys following a substantially improved financial offer by pharma firm Biogen. FA is a rare, genetic progressive neuromuscular condition that causes nerve damage, muscle weakness and loss of mobility.

Emma said her biggest wish now is for a cure to be found. She told C103FM: ‘We should never have had to go through what we did. I’m hoping I can see my future now… actually live my life again. We can only hope that eventually in our time that there will be a cure and hopefully I will be able to walk again, that is all I want.’

Independent Ireland leader Michael Collins, who campaigned alongside Emma and others living with FA, said the HSE decision was a case of common sense ‘finally’ prevailing.

The Cork South West TD added: ‘Today is about the patients. It is about the families who refused to give up. It is about every campaigner who stood up and demanded that people living with Friedreich’s Ataxia were not forgotten.

‘I want to personally acknowledge Emma O’Shea and her mam Kathleen, her dad Ted, and her brother Kevin, who has already lost his older brother Timmy, along with Emily, Aoife, Isabella, Craig and Paudie Cody, Jessie and all of the other Friedreich’s Ataxia patients and their parents and families.

‘Their relentless campaigning, courage and absolute refusal to give up has been extraordinary.’