THE mum of a Cork boy who has Spinal Muscular Atrophy (SMA) is joining other parents in a day of action tomorrow to demand that the wonder-drug Spinraza is provided to sufferers in Ireland.
Rebecca Bulman from Youghal was speaking to The Echo in the wake of a decision by the NHS in England and Wales to approve the drug.
Her five-year-old son Harry was diagnosed with SMA when he was 18 months. He has to use a wheelchair and suffers from scoliosis as part of his condition.
In Ireland, families of 26 children, including Harry, are awaiting a decision from the HSE on whether the drug will be approved here. The families held a demonstration at Leinster House in February.
Tomorrow, they are organising a photograph campaign on social media, with messages written on white T-shirts, seeking the approval of Spinraza.
Rebecca said: “We will bombard the HSE and the members of the government with letters, especially Minister for Health Simon Harris.”
A decision had been expected on May 14 but the families are still waiting. A decision is now anticipated in the coming week.
In February, the HSE wrote to Biogen, the producers of Spinraza, to say the body was refusing to provide reimbursement of the drug at its current price. Families are now hoping that proposals from the company will get a positive response from the HSE.
Following the February decision, parents, their children and supporters organised the demonstration at the Dail, and a petition was signed by up to 90,000 people.
That demonstration was held on Rare Diseases Day.
Five-year-old Harry was diagnosed with SMA in February 2015. His family heard about Spinraza two years later and were hoping that he could have access to it but it is not approved in Ireland.
Rebecca said his scoliosis is getting worse. He finds it difficult to write because his hands are weak because of the condition.
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.
Little Harry recently picked up a cold which lasted for two months because he could not fight it off.