The mother of a young boy from Youghal with a rare illness is appealing to the Cork public to follow the guidelines issued in response to the coronavirus outbreak, saying it must be done to protect the vulnerable.
Tomorrow will be a Mother’s Day of mixed emotions for Rebecca Bulman. As the mother of a little boy with a rare disease, she is celebrating the fact he appears to be reacting well after several months of treatment with a new drug.
Six-year-old Harry has received four doses of spinraza since November, for Spinal Muscular Atrophy (SMA). He has to use a wheelchair and suffers from scoliosis as part of 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. He also has brittle bones.
Harry also finds it difficult to write.
“He has been really well and he has been building himself up since being on it,” Rebecca says.
“I don’t think Harry would be able to fight off the virus without spinraza,”
But there are still concerns even with the new medication and the whole family are isolating to ensure that Harry does not get infected
Rebecca is concerned that people are not taking enough steps to ensure that the vulnerable in society are protected, after observing people while she was in a supermarket in recent days.
She urged people to follow all the guidelines and advice from public health specialists, adding that she would love to be one of those mothers who does not have to constantly worry about a vulnerable family member.
Harry receives spinraza in Temple Street Children’s Hospital, and his next dose is due in May.
He is one of 25 Irish children getting the drug.
Rebecca had campaigned with other parents to get HSE approval for the drug.
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 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.
Following the February decision, parents, their children and supporters organised a 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 the 25 children who were approved last June for the drug, which is potentially life-saving for SMA sufferers. He received his first dose in November.
He attends school in Bunscoil Mhuire in Youghal, and also attends Enable Ireland regularly for therapy.