A Mayo Senator is appealing to politicians to get involved in the campaign for a life-changing drug for children with Duchenne Muscular Dystrophy.
Last month, the HSE announces its decision not to fund Translarna, which is a drug that treats boys with a specific type of DMD, that can help to slow down the progression of the condition and can them keep active and walking for longer.
Familes of children with Duchenne Muscular Dystrophy met with the Minister for Disabilities Finian McGrath at Leinster House last week in a meeting facilitated by Mayo Sinn Fein Senator Rose Conway-Walsh.
Ann-Marie Harte-Walsh, mother of 5 year old Lewis from Castlebar, told the meeting that having access to Translarna is the only way toprevent her son suffering the complications caused by being confined to a wheelchair from a young age.
The drug is currently available in over 20 European countries, including Northern Ireland.
Senator Rose Conway-Walsh says huge amounts of money are not involved, as the there are currently only two children in Ireland eligible for it, and she says politicians have a responsibility to join families in fighting for access to the drug.