'Approve NEW 'Miracle Drug' Spinraza for SMA Patients in Ireland Immediately'

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Hello there,


We are writing to share our story and ask for help for our little boy Sam. 


Sam is our beautiful little 8 year old boy and he has SMA type II.


Spinal Muscular Atrophy (SMA) is a degenerative neuromuscular condition, characterised by generalised  weakness of all the muscles in the body.  SMA is a debilitating, life-threatening and rare disease - the leading genetic cause of death in infants. 


Sam is in a powered wheelchair. He is peg fed and so does not eat or drink orally. Extensive chest physio and physio on all his limbs to keep him supple and free from pain is part of his everyday routine. He has already endured so much in his short life, he's had long hospital stays, sometimes for weeks and months at a time, largely because of chest infections etc. Life is very difficult for our darling Sam.

 

Despite all of this, he is the brightest, sweetest, kindest boy you could ever meet… so full of love. He has 2 beautiful sisters, Kayla (6) and Sarah (2). He loves school and all his friends at Scoil Chrónáin. He loves football and he is definitely West Ham United's biggest fan (he still thinks they can win the Prem having lost their first 4 games!).


Previously there was no cure or even treatment for SMA, now there is!


Spinraza is a first-of-its-kind treatment licensed throughout the EU to treat SMA. Spinraza’s availability has created hope for the first time, for people living with SMA. It has been described as a ‘miracle drug’ because it changes children’s lives. Spinraza is making a momentous difference in the lives of those who, previously, had no other options and who, for some, faced death.


Spinraza is now available (funded by the Governments) in 20 other countries in Europe, changing the lives of patients there, but not in Ireland.

 

We are calling on the Minister for Health, Simon Harris, to approve funding for this life-saving treatment for Irish Spinal Muscular Atrophy (SMA) patients; for Sam and the other 25 children in Ireland waiting for this chance of a better life, and in some case a chance of life itself.


Time is not a luxury for Sam and the other 25 children in Ireland waiting on this drug. 
SMA is a degenerative condition, we need this life saving drug TODAY.


Please share this post with everyone you know, sign the petition… you can help by just adding your name.

 

Thank you for your attention and support.

With love,
Fiona and Paul Bailey



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