'The gift of hope' - Offaly boy secures life-changing drug

Justin Kelly

Reporter:

Justin Kelly

Email:

news@offalyexpress.ie

'The gift of hope' - Offaly boy secures life-changing drug

'The gift of hope' - Offaly boy secures life-changing drug

An Offaly boy has been given "a chance of a better life" according to his mum after the government approved Spinraza, the only treatment available for children with the muscle-wasting disease spinal muscular atrophy (SMA).

Offaly boy Sam Bailey is one of those children and his mother Fiona said: "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," she said.

"Thank you to our wonderful families and all our fabulous friends. 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."

"We will certainly keep putting up posts from time to time on the progress we hope and pray for the smallest of improvements, which will be massive in our world. 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," she concluded.