Following on from a long campaign, Sam Bailey from Rathcoole was one of 25 children who suffer from SMA and were approved for Spinraza by the HSE in the early Summer. Sam who attends Scoil Chrónáin in Rathcoole lead a campaign earlier this year with the support of the teachers, parents and fellow students to access spinraza. However, now in October the initial provisional dates for the roll out of spinraza have come and gone and Sam still waits for his spinraza.
Sam’s Mum, Fiona Bailey commented “We must get asked at least 10 times a week ‘how is Sam getting on with his treatment?’ And so many more, just as respectfully, don’t ask, but wonder… The HSE approved spinraza and the other 25 children suffering from SMA in Ireland on the 11th of June this year. Yet 4 months later Sam and all the other children are still waiting for treatment.”
Sam is more susceptible to illness or example flu, this time last year Sam was in ICU and has been three times since. Fiona concluded ” We are facing yet another deadly flu season, without spinraza, despite being promised it by the HSE. We are heartbroken, devastated and disgusted at the treatment Sam is once again receiving from the HSE; no communication, no transparency and no plan going forward. We had received provisional dates of July, August and October/November for the roll out of Spinraza and just last week there appears to be some doubt over the October/November roll out date. Sam was in ICU this time last year, and 3 times since. It is unthinkable that he will not receive Spinraza in the coming weeks. We are calling on Minister Harris to ensure the HSE delivers on their promise without any delay. Anything else is completely unacceptable.”
