Mum of young Cork boy with rare condition says easing lockdown is terrifying

Mum of young Cork boy with rare condition says easing lockdown is terrifying
Rebecca Bulman and her son Harry.

THE mother of a young boy with a life-threatening condition is appealing to people to obey public health guidelines to protect vulnerable people from Covid-19.

Rebecca Bulman, from Youghal, has raised concerns that the easing of restrictions today could put vulnerable people at greater risk.

Her son Harry was diagnosed with spinal muscular atrophy (SMA) when he was 18 months old, in 2015.

He was one of 25 children who were approved in June 2019 for the Spinraza drug, which is potentially life saving for SMA sufferers.

SMA reduces a person’s physical strength by affecting the motor nerve cells in the spinal cord.

It can affect a person’s ability to walk, eat, or breathe.

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

He has had five doses of the drug since last November, the most recent being on Thursday.

Rebecca told The Echo that she was frustrated that there were no gardaí en-route from Youghal to Temple Street Children’s Hospital, Dublin, on Thursday, enforcing the public health restrictions around Covid-19.

She was also angry to see people gathered in groups in Youghal in recent days, not observing social distancing.

Parents Rebecca and Ian Bulman with Harry Bulman 5, who has SMA, and his brother Josh Bulman at a protest outside Leinster House in June 2019.
Parents Rebecca and Ian Bulman with Harry Bulman 5, who has SMA, and his brother Josh Bulman at a protest outside Leinster House in June 2019.

“We will never get back to normal if people don’t do what they are supposed to do,” she said. 

“We are terrified for Harry.”

She said her family fought long and hard to access Spinraza for Harry and do not want to lose him to the Covid-19 virus.

The family heard about Spinraza in 2017 but it was not approved in Ireland at the time.

He received his first dose of Spinraza last November, after a long wait.

In February 2019, 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.

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