WATCH: Longford siblings with rare disease who 'don't have time' issue HSE plea for drug
Liam and Kiara Lynch were diagnosed with Friedreich's ataxia (FA) in 1990 and 1997
Two North Longford siblings battling a rare, progressive neurodegenerative disease who are campaigning for access to life-changing treatment for them and 200 patients, have urged the government and drug manufacturer Biogen, to come together to find a solution.
Kiara Lynch was diagnosed with Friedreich's ataxia (FA) at the age of 13 and for more than 28 years she has been battling what she describes as 'the relentless progression' affecting all of her abilities.
The effects of FA are having a significant adverse impact on her body and the 42 year-old said she has 'cardiac issues, lung issues, bladder issues, pressure sores, and constant pain in my neck and back'.
Kiara recently recorded a video of herself with her brother Liam Lynch and another two siblings Helen and Brona Kearney.
The video gives details on how Liam was diagnosed with the rare disease in 1990 and Kiara was diagnosed in 1997.
Kiara said Helen and Brona Kearney were diagnosed in 2002.
In the video Kiara, Liam and the Kearney siblings say they 'don't have time' and everyday they are 'losing their physical abilities' with even their 'organs are shutting down'.
Liam stresses during the video they need access to 'the only approved treatment now'.
Price negotiations between the HSE and Biogen (Idec) Ireland Limited for the Friedreich's ataxia treatment Skyclarys (omaveloxolone) have been ongoing in recent months but they stalled due to an outstanding commercial proposal.
Kiara, Liam, Helen and Brona have urged the HSE and the applicant, which is drug company Biogen to 'come together and make an agreement'.
New drug treatment Skyclarys or omaveloxolone, the first treatment in the world for FA, was first approved for use in Europe in 2024 when Biogen Idec (Ireland) Limited, formally requested the HSE to fund the medication through the public health system.
Kiara said her and sister Caitriona met Longford TD Micheál Carrigy at her home just over a month ago.
Deputy Carrigy described Kiara as being 'inspirational' and having a supportive family and he said he would highlight the call for 200 FA sufferers to benefit from access to the treatment.