Local residents get behind the Spinraza campaign
The wider Kilkenny community has got involved in a social media campaign to highlight the plight of six-year-old Isaac Brennan who desperately needs access to a life-saving drug.
Isaac lives with Type 2 Spinal Muscular Atrophy and is unable to walk independently. Spinraza, a medication proven to help treat SMA is currently not available in Ireland, which is one of only two countries in Europe where the drug is not available.
Friends, family and members of the local community are creating colourful placards demanding access to Spinraza for Isaac and other sufferers.
His Mum, Carol Brennan has also pleaded with Minister for Health, Simon Harris to ‘do the right thing and approve Spinraza now’ adding that it is the best treatment available to allow her son reach his potential.
Minister Harris responded by saying that negotiations between the HSE and the manufacturer of the drug are ‘at a sensitive stage’.
“We are making real progress. I am optimistic that we will get this done,” he said adding that he had met with the HSE Director General in relation to the matter.
“I think we are going to make this happen, I am very hopeful of a positive outcome soon” he said.
Isaac’s parents described the comments by Minister Harris as ‘positive’ but stressed that they need a date when the drug will be made available.
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