FACE-TO-FACE Grace O’Malley from Hollymount with her mum Lorraine meeting the Minister of Health Simon Harris and Minister for Rural and Community Development Michael Ring at the opening of the new Mayo Roscommon Hospice building in Castlebar. Pic: Conor McKeown
The lack of clarity and transparency from the HSE regarding a date to commence the treatment of Spinraza for a young Mayo girl has been criticised by her mother.
Nine-year-old Grace O’Malley from Robeen, Hollymount was informed that she was due to start her first treatment of the groundbreaking drug, Spinraza, at the end of October. However her parents Lorraine and Paul were recently informed that ‘due to resource issues and bed shortages’ the treatment had to be postponed and they were not given any indication of when the treatment might begin.
Spinraza was finally approved by the HSE in June following a long campaigned by parents of children with Spinal Muscular Atrophy (SMA), a genetic condition that affects the nerves in the spinal cord.
However, many children with SMA like Grace and Cillian Mearns from Shrule have yet to receive the treatment. Lorraine told The Mayo News that Grace’s condition continues to worsen and they are in the dark regarding when the treatment will begin.
“I wrote to Temple Street Hospital and the bottom line I want to know is we want a specific date when Grace will start her treatment for Spinraza. I asked for them not to delay a reply but they have not got back to us and I’m not sure how much more of this lack of communication we can cope with,” she said.
“Our consultant met with the Temple Street executive on Monday [October 21] and with the Children’s Hospital executive on Thursday and we were told we would know more. We haven’t heard a dicky bird since. We are being spoon-fed bits of information but we still do not have a date and nothing has been set in stone. We should be getting clarity and transparency but we are not.”
There are approximately 25 children living with SMA in Ireland and before Spinraza, there was no treatment for the condition and over time children’s conditions would deteriorate causing problems with movement, muscle weakness and difficulty breathing and swallowing.
Lorraine said she was naïve in June when she thought all the campaigning was at an end and cannot understand why the treatment cannot be rolled out.
“From what I understand this [treatment] is a day procedure if all goes well, and I do understand there can be complications, and they may not need a bed overnight. But without complications this does not take long and as far as I am aware it will only take 15 minutes to insert the drug into the spine. I cannot understand why it cannot be done.”
Lorraine and Grace met with Minister Simon Harris when the Minister for Health officially opened the Mayo Hospice in Castlebar last week. While she could not fault his empathy and concern and his desire to see the treatment begin, she said he could not say when the treatment will begin.
The failure by the HSE to start the Spinraza treatment for Grace and Cillian was raised by Sinn Féin senator Rose Conway-Walsh in the Seanad where she called on the HSE to administer the drug.
In January Grace is scheduled to undergo a large spinal operation and Lorraine said she worries what the winter holds as Grace’s condition continues to worsen.
“She is getting weaker and it is hard to watch. When she is doing her homework she has to email her work, when last year she could write it. It is just horrible to see her sick and it is always worrying because we were told that pneumonia could kill her.
“It is difficult to think why Grace and others are being treated this way but she is such a trooper and never complains. Grace asked me if I was getting rid of the ‘Spinraza now’ signs but I won’t until I see the drug getting administered into her. Grace is our concern and we have to fight for her and to be her voice. I thought the campaigning was over but will be continue to fight, even though it can be very draining.”