portal_normal PUBLICATION STRUCTURE cat: /publications/bn-breakingnews/ireland/national


portal_normal STRUCTURE section: nationalnews

portal_normal getURLCurrent: /web/eveningecho/nationalnews/detailedstory?p_p_id=DetailedStory_WAR_portalsuite&p_p_lifecycle=0&_DetailedStory_WAR_portalsuite_arg_detailstory_uuid=31c89c66-fbb7-4650-8aa3-eb7bad52c80e

portal_normal getPortalURL getURLCurrent: http://www.echolive.ie./web/eveningecho/nationalnews/detailedstory?p_p_id=DetailedStory_WAR_portalsuite&p_p_lifecycle=0&_DetailedStory_WAR_portalsuite_arg_detailstory_uuid=31c89c66-fbb7-4650-8aa3-eb7bad52c80e

portal_normal getPortalURL: http://www.echolive.ie

portal_normal domain: http://www.echolive.ie

STRUCTURE EE_062016_general_layout.tpl - url: /nationalnews/Calls-for-Health-Minister-to-approve-life-changing-drug-31c89c66-fbb7-4650-8aa3-eb7bad52c80e-ds

STRUCTURE EE_062016_general_layout.tpl - section: nationalnews

STRUCTURE EE_062016_general_layout.tpl - orgcat: orgcat = /PUBLICATIONS/BN-BREAKINGNEWS/IRELAND/National


Calls for Health Minister to approve life-changing drug

Campaigners are calling for the Health Minister to approve a life-changing drug for people suffering from a rare muscle disease.

Irish sufferers of Spinal Muscular Atrophy (SMA) are meeting with TDs in Leinster House today to make the case for the drug called Spinraza.

Spinraza is the first drug that can alleviate the muscle wasting condition. Although classified as rare, SMA is the leading genetic cause of death of infants and toddlers.

Jonathan O'Grady from SMA Ireland says the drug can transform the lives of children with the condition.

"A patient who previously could only lie on the floor and roll could now potentially stand and maybe even take a step," he said.

"A patient who before could only sit up straight might now be able to crawl."

Spinraza is now available in 19 EU countries but not in Ireland.

"There are 19 countries in the EU who have already approved Spinraza for general release," Mr O'Grady said.

"If I lived in Spain today I'd have this drug. If I lived in Italy today I'd have this drug.

"But because I live in Ireland there's a question mark. We want that question mark removed."

Families from the #SpinrazaNOW campaign are to make a public appeal at Leinster House today.

"Spinraza is more than a drug. It brings hope to people who have never had hope before," said Sinead Perez, the mother of 10-year-old Jordan from Sixmilebridge, Co Clare.

"Until now it's been a slow march downwards, watching someone fight with their own body as it fails them more and more.

"Without Spinraza Jordan's condition will continue to deteriorate. He's losing muscle function every day that passes. Spinraza will help maintain him at his current level or even help Jordan to regain some of the muscle function he's lost.

"It may give him back some of his independence taken from him by this deadly disease, like the ability to feed himself, scratch his head or lift a cup, simple everyday tasks we take for granted.

"It will give Jordan the chance at a longer and higher quality of life by helping to slow down, stop or even reverse the progression.

"This is the hope it brings, and more, it also brings the hope that Jordan will have the chance to grow up. To make it to adulthood, where he can use his talents to contribute to society like everyone else. What mother would want anything less?"

Digital Desk