'It's a proven lifesaver' - Ex-Mayo ladies football manager calls on new drug to be made available in Ireland
Former Mayo ladies football manager Frank Browne has called on Minister for Health Simon Harris to make a drug available in Ireland that can treat people suffering from a rare genetic disorder known as Spinal Muscular Atrophy.
In 2004, Browne's daughter Emma passed away from the illness aged six, and Browne is looking for public support to make the drug Spinraza available in Ireland. There are currently an estimated 70 sufferers of Spinal Muscular Atrophy in Ireland and tomorrow Browne will be part of a group who will read a statement outside Dail Eireann as they tried to persuade Minister Simon Harris to make the drug available to treat patients in Ireland.
The manager of the Mayo ladies team who reached last year's All-Ireland final says that if his daughter had been able to receive Spinraza in 2004, she would still be alive.
"Unfortunately Spinraza was not available to Emma as an option, but it is now and it's a proven lifesaver," Brown said.
"It is a bit like the Orkabi situation [a drug that can treat sufferers of Cystic Fibrosis] but everyone knew somebody with Cystic Fibrosis. This is a lot rarer."
The families of Grace O'Malley (9) and Cillian Mearns (6) - who both suffer from the disorder - will also be present outside Dail Eireann where a statement will be read to appeal for support.
A petition has been started to try to get Spinraza available in Ireland and it has received almost 25,000 signatures.