Pictured is Sam Bailey and his sisters Kayla and Sarah. In Sam’s words ‘The best day of my life!’ after he heard the news about the Spinraza drug now being available to him. Sam’s Mum Fiona commented “We are absolutely over the moon as you can imagine! It’s just so amazing to finally know that Spinraza will be a reality for Sam! HOPE is a wonderful thing. Thank you, each and every one of you, for all the love and kindness you’ve shown to Sam and to all of our family throughout our campaign for Spinraza. Without your support and help we would NOT have #SpinrazaNOW for Sam.”
Delighted with Spinraza Approval
John Curran T.D. has said that he is delighted with the decision in recent weeks by the HSE to finally approve the drug Spinraza for the people and especially childen who suffer with SMA. “I have continued to raise the ongoing failure to make Spinraza available to those who desperately need it in Dáil Éireann and common sense has prevailed. This drug is a first in the treatment for SMA and I am just delighted that some relief and happiness might come out of this news for the wonderful families that I have met during this campaign.
“Spinal Muscular Atrophy is a very serious degenerative neuromuscular condition that affects virtually every aspect of a person’s life. There are 25 children diagnosed in Ireland and two of those young people live locally in Clondalkin and Rathcoole. “Their parents and families have been relentless in their fight to secure this medicine, organising protests outside Leinster House and a petition with over 100,000 signatures to Minister Harris. “As debilitating as the daily routine, long hospital stays and extensive physiotherapy are there is a drug that can make transform their quality of life. Spinraza is clinically effective and has been proven to work by slowing down the muscle wastage and in many cases allowing muscle. He concluded; “It is a shame that it has taken so long to have Spinraza authorised and this delay has exposed our system of approving drugs and I will be calling for a review of our system seeing that we can be the only country in Europe delaying authorising drugs for this length of time.
Pictured above: Sam Bailey who suffers from SMA and his class mates campaigning for the drug earlier this year.