THE mother of a young boy with Spinal Muscular Atrophy will tell the Dáil today that her son cannot go upstairs to the toilet without her help and has to be turned in bed up to seven times a night.
Rebecca Bulman, from Youghal, was one of five parents of children who were in the Dáil this morning to appeal to TDs to help them secure access to Spinraza, a drug which they believe will change their children’s lives. Rebecca’s five-year-old son Harry has to use a wheelchair and she says his condition has gotten worse as time goes on. He was diagnosed at 18- months-old.
The Health Service Executive last week wrote to Biogen, the producers of Spinraza, to say they were refusing to provide reimbursement 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.
Ms Bulman said: “Harry is completely dependent on me. I have to carry Harry upstairs to the toilet.”
She said: “We were told that Harry’s life expectancy was late teens, early 20s. As a 22-year-old new mother, you can imagine this was hard to hear.
“When he falls over, he cannot pick himself back up. To scratch his own head and brush his own teeth are harder every day.”
She continued that Spinraza would greatly benefit not just Harry but the lives of his whole family.
“No sibling should reach their teens and watch their brother waste away and die, when there is medicine to prevent it,” she said.