SMA

  • The HSE has today approved the drug Spinraza for children with SMA -Spinal Muscular Atrophy.

    Following a long campaign to have the drug approved, the HSE has given the green light this afternoon.

    Two children from the south Mayo region - Grace O'Malley and Cillian Mearns - are among those suffering with SMA, and the decision to grant funding for the life-changing drug has  received cross-party welcome by local politicians.

     

     

  • With just days to go to the Budget, the families of children with SMA - Spinal Muscular Atrophy - are making a final plea to Government to sanction the drug Spinraza, which they believe will halt the progression of the rare genetic condition.

     SMA affects 25 families nationally, including two families in Co Mayo.

    It's estimated it would cost in the region of €3 million per year to provide the drug for these 25 children, but to date, the Government has not sanctioned its approval.

    Health Minister Simon Harris is waiting for a recommendation from the HSE, but the families involved say a decision is needed now, as the childrens' conditions are getting progressively worse.