Joy for family as Cork boy gets first dose of ‘miracle’ drug 

A CORK boy who has been waiting for a miracle drug for Spinal Muscular Atrophy got his first dose of it yesterday, five months after it got HSE approval.

Six-year-old Harry Bulman from Youghal received the drug at Temple Street hospital.

His delighted mum Rebecca, who had campaigned with parents of 24 other Irish children with the disease for the drug, said: “He was very brave. It went perfectly.”

She added that Harry and his family are now hoping the drug will work.

Harry was diagnosed with SMA when he was 18-months-old, in 2015.

His family heard about Spinraza two years later and were hoping that he could have access to it but it was not approved in Ireland at the time.

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 then price.

Following the February decision, parents, their children and supporters organised the demonstration at the Dáil, and a petition was signed by up to 90,000 people.

That demonstration was held on Rare Diseases Day.

Harry was one of 25 children who were approved in June for the drug, which is potentially life saving for SMA sufferers.

He has to use a wheelchair and suffers from scoliosis as part of his condition.

His mother told The Echo recently that Harry currently has very brittle bones in his ankles and recently was in a cast for a fracture.

She added that he was also in hospital during the summer because of chest problems resulting from his 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.

Harry also finds it difficult to write.

He attends school at Bunscoil Mhuire in Youghal, and also attends Enable Ireland regularly for therapy.