My daughter Nellie Lannen (21 months old) and Lara McHugh (6 months old)  both have SMA Type 1. This rare but debilitating disease causes neuromuscular weakness and profound disability, and is ultimately fatal.  The life expectancy of sufferers of this condition is 2 years old.  Drug company Biogen have developed a new drug treatment for their condition called Nusinersen or Spiranza.    Though costly, it is life saving for our children. We wish to avoid a long protracted process to bring this drug into Ireland. Irish children should have access to this without delay.  Children in the US, UK and across Europe are getting access to this treatment now. Statistically, there will be another 2 children born in Ireland with this disease in the next 12 months. We don't have the time to negotiate.