'I’m in a state of shock, just shaking and crying'

'I’m in a state of shock, just shaking and crying'
Photo: Gareth Chaney Collins

A CORK mother broke down in tears after learning that her child would finally have access to a wonder-drug that can help with a rare genetic defect.

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.

Rebecca said:

“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.”

When Rebecca first saw the announcement from Mr Harris, she admitted she had to read it a few times before the reality of the news sunk in.

“It prolongs his life and means he can build and maintain his strength and not get sick. It means a more fulfilled life for him,” she added.

“So yes, it means everything really.”

Harry and up to 25 other children are likely to benefit from today’s decision.

Rebecca said that ensuring the drug is in place in the future for other families who may have to go through the same harrowing diagnosis is crucial.

“It would make the whole process of being told about spinal muscular atrophy (SMA) so much easier.

“When we were told, there was nothing there for us and it was just the most devastating day of our lives,” she said.

“But today is the happiest day of our lives.”

SMA reduces a person’s physical strength by affecting the motor nerve cells in the spinal cord. This can affect a person’s ability to walk, eat, or breathe.

Mr Harris said that the fight to have the drug approved here had been a long journey for families involved.

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