South Mayo families get 30,000 petition signatures

A CLEAR MESSAGE  Cillian Mearns and Grace O’Malley show their support for the Spinraza campaign.

Ciara Galvin

TWO south Mayo families are continuing their fight for access to a life-changing drug for their children, by gaining 30,000 petition signatures.
The Mearns and O’Malley families, along with over 20 other families, are urging the Minister for Health Simon Harris to allow the drug Spinraza be made available to their children who have a muscle wasting condition called SMA (Spinal Muscular Atrophy) Type 2.
The debilitating condition has left Grace O’Malley (9), from Robeen, and Cillian Mearns (6) from Kilmaine, wheelchair bound.
Described by doctors as ‘groundbreaking’, the drug received its first approval in the US in late 2016 and has since been approved in the EU, but is still not available in Ireland.
A Change.org petition calling on action from Minister Harris has gained approximately 20,000 online signatures, while 10,000 signatures have been gathered over the last number of days around Mayo.
“It’s been a whirlwind,” says Grace’s mother, Lorraine.
“The support has been out of this world from local people, people trying to help, and wanting to sign letters and asking to send more letters, we’ve just been blown away.”
The mother of two told The Mayo News she is disappointed with the lack of backing from Fine Gael representatives.
“We haven’t heard back from basically any of them. Alan Dillon is the only one who has said he’d give us a bit of help, obviously he’ll need a bit of help too. I got a letter from Michael Ring, the usual letter saying ‘thank you for your letter, it will be brought to the attention of the Minister.’”
Lorraine adds that Health Minister Simon Harris has not responded to anyone’s letter.
“He has been inundated with letters from people, Twitter, and everything.”
Meeting with Fianna FΡil Deputy Lisa Chambers, yesterday (Monday), Lorraine hopes that more understanding of the condition by those in influential positions will result in a positive step forward.
“They are sitting behind a desk making a decision about a drug that you wonder do they know anything about. That a child with SMA can’t even scratch their head. It’s our kids that we have to look at deteriorating.”
Lorraine said she and her husband Paul, along with Cillian’s parents, also Lorraine and Paul have requested meetings with many representatives.
“We’ve asked for a meeting with Michael Ring, Enda Kenny, all of them, Lisa is the only one who has met us.”
Though frustrated with the lack of political will, Lorraine is encouraged by the support of the Mayo community.
“We’re putting in so much work to fight for the kids and you feel like you’re getting great support from a community who they [politicians] will be looking to get votes from and yet they won’t meet the people it affects.”
SMA families plan to travel to Leinster House this Thursday.

MORE To sign the petition search ‘Approve NEW ‘Miracle Drug’ Spinraza for SMA Patients in Ireland Immediately’ on change.org or sign the petition at the Ballinrobe Races this Friday.