A Kilkenny mother says “We need to get answers and we need to get them fast.”
Carol Brennan is looking for access to the drug, Spinraza, for her six-year-old son, Isaac, who suffers from a rare condition called Spinal Muscular Atrophy type 2.
She went along to speak to Kilkenny county councillors and Junior Minister John Paul Phelan at their meeting in Kilkenny yesterday.
The HSE met last week about the issue but Carol says she’s been given no update.
The medication would make Isaac’s life a lot easier and their family life in general. Carol says it would make a big difference to his quality of life.
Minister John Paul Phelan says he thinks there may be good news coming down the line as regards access to the drug. He told KCLR news a scheme for Spinraza is being considered by the HSE.