THE mum of a Cork boy with Spinal Muscular Atrophy has told TDs that his diagnosis was the worst day of her life, with their future and dreams she had for them both being taken away.
Rebecca Bulman from Youghal was one of five parents who addressed TDs yesterday morning, before a protest at the gates of Leinster House against the HSE’s decision not to provide the wonderdrug Spinraza to 25 children with the condition.
Her five-year-old son Harry was diagnosed with Spinal Muscular Atrophy at 18 months.
She said: “On February 27, 2015 we were called to the hospital where we received the worst diagnosis. This was to-date the worst day of my life. The future and dream I had for us were now gone.”
She said that when the family heard about Spinraza in 2017, there was a light at the end of the tunnel.
She explained: “There was hope and excitement for the future.”
“Since the beginning of our campaign a long six months ago, Harry’s scoliosis has become dramatically worse. We had hoped we would have received Spinraza and Harry could regain or maintain some muscle mass.”
She added: “The beginning of the school year, Harry would fly through his homework. Now, even though they get a very little amount, it is becoming more difficult and slower.”
Rebecca told TDs that Harry’s knees are becoming stiffer and he has to wear a knee cast.
She continued: “If Harry’s powerchair needs any work or breaks, he is left without mobility for anything up to a week.”
The HSE notified the producers of the drug last week that the executive would not reimburse the cost of the drug at its current price.
It currently costs €600,000 per child for the first year, and €380,000 for each subsequent year.The company legally now has 28 days to respond or make representations to the HSE’s proposed decision.
Yesterday’s protest was attended by TDs including Fianna Fáil leader Micheál Martin and Labour leader Brendan Howlin.