Rebecca Bulman, from Youghal, said she was “overwhelmed, thrilled and absolutely over the moon” at the HSE’s decision to finally approve the use of Spinraza, a new drug for children suffering from Spinal Muscular Atrophy (SMA).
Minister for Health Simon Harris made the announcement today after families had battled for years to gain access to the drug which can slow the effects of the condition, allowing babies and toddlers to develop stronger muscles and survive for longer without breathing support.
Rebecca’s five-year-old son Harry was diagnosed with the muscle wasting condition in 2015.
His family heard about Spinraza two years later and were hoping that he could have access to it, but until yesterday it was not approved in Ireland.
“I’m actually in a state of shock, just shaking and crying to be honest.
“We’ve been brushed off a few times before, so I wasn’t really even thinking about it.
“But then when I heard, I just fell on the floor in shock and joy.”