Killeigh mum's joy over SMA drug approval

Story by Olga Aughey

Friday, 14th June, 2019 5:00pm

 Killeigh mum's joy over SMA drug approval

Young Sam Bailey

"Best day of my life" was how nine-year-old Sam Bailey described the news that he would be among 26 children in Ireland to be approved for the drug Spinraza.

After relentless campaigning by Sam's mum Fiona who is from Killeigh, along with other families for the drug to be made available in Ireland, the NHS were the latest to approve it just last month, leaving only Ireland and Estonia the only two countries in Europe not providing it to suffers of Spinal Muscual Atrophy (SMA).

However, Minister for Health Simon Harris made the announcement earlier this week that Spinraza would now be available to all children with SMA.

"We would like to share with you the wonderful news that Spinraza has been APPROVED by the HSE!" Fiona posted to her social media on Tuesday.

"This means that Sam, and all the other children suffering from SMA in Ireland, will be able to begin their treatment of this amazing drug in the coming months! We are so grateful and unbelievably happy; a chance of a better life for our darling boy, Sam.

"Today we have been given the gift of HOPE."

Fiona went on to thank her family and friends for their support for the campaign "Give a damn for Sam".

"We thank you all from the bottom of our hearts for caring deeply, for the support and for the kindness you’ve shown to us. Thank you one and all for truly Giving a Damn about Sam!… Sam's Super Fans!"

Fiona said she will also keep everyone up to date on Sam's future progress.

"The smallest of improvements will be massive in our world, where up until now, changes have always been in the negative, physically, for Sam. "Sam is stronger than anyone I know, in his heart and in his soul; he is a fighter and now that Spinraza is a reality for us, the future looks brighter."

Virgin Media News travelled to Sam's school where his class were all overjoyed with the news.

"It's just been amazing, it's just unbelieveable news that Sam is finally going to get the treatment that he so richly deserves," continued Fiona.

She also said the drug should be available for adults in Ireland too. "We want Spinraza for all the SMA sufferers in Ireland - no one left out," stated Fiona.

Minister for Health Simon Harris announced that the HSE would fund the drug for children only.

“This is the first ever treatment for children with SMA. I know how hard the long journey to get here has been for families but very glad children in Ireland will now have access,” Harris tweeted.
CMG Body: In a statement, the HSE said it had approved access for children with SMA Type I, II or III on “an exceptional and individualised basis”.

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