THE mum of an east Cork boy fighting for access to a drug for Spinal Muscular Atrophy will protest with other parents outside the Dáil next week.
Rebecca Bulman is fighting for a drug called Spinraza to be approved here to help children like her son Harry. The five-year-old cannot walk and uses an electric wheelchair.
Rebecca said she and other parents had been hoping for a decision from the government and the Health Service Executive this month on whether approval would be granted. Spinraza has been granted in other countries and has been attributed to improvements by sufferers of SMA.
Spinraza is one of the most expensive drugs in the world and could cost almost €30 million for the first year of providing the drug to the 70 SMA sufferers in Ireland.
Rebecca said all the parents of young children who have the condition will protest at the Dáil next Thursday “to show we aren’t going away”.
But she admitted that the families currently feel a bit defeated in their fight.
The protest takes place on Rare Disease Awareness Day.
Harry attends school in Bunscoil Mhuire in Youghal and also attends Enable Ireland regularly for therapy.
He finds it difficult to write because his hands are weak because of the condition. He was diagnosed at 18 months.
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.
Harry recently picked up a cold which lasted for two months because he could not fight it off.
Members of the public can help families like hers by logging onto the SMA Ireland website and emailing TDs through it, asking for approval to be granted for Spinraza.
The issue was raised in the Dail in recent weeks by Fianna Fail leader Micheal Martin.