Grace receives the best Christmas present

LONG WAIT OVER Grace O’Malley from Hollymount with her mum Lorraine meeting the Minister for Health Simon Harris and Minister for Rural and Community Development Michael Ring at the opening of the new Mayo Roscommon Hospice building in Castlebar recently. Grace will final start her Spinraza treatment in January. Pic: Conor McKeown

Hollymount youngster to begin Spinraza treatment at the end of January

Anton McNulty

TEN-year-old Grace O’Malley got an early present a week before Christmas when her parents were informed that a date has been set for her first round of treatment with the life-changing drug Spinraza.
Tears of joy flowed from the eyes of her mother Lorraine when her husband Paul rang to say that he had received an email from Mona Baker, the CEO of Temple Street Children’s Hospital, to say that Grace would start her treatment on January 30, 2020.
“It was like I was told I won the Lotto,” Lorraine told The Mayo News. “I never felt so high in my life. I couldn’t believe it. It came totally out of the blue.
“Paul rang me when I was putting on the dinner and said said, ‘We got a date’. He didn’t even mention Spinraza. I said ‘What are you on about?’, and he said he got an email from Mona Baker and Grace has been given a provisional date of January 30.
“I was balling crying, it was such a shock. I had to go upstairs and have a cry to myself because I didn’t want Grace to see me crying incase she got upset. I pulled myself together and called Grace and [her brother] Mark in and told them I have really big news.
“Mark said ‘I bet we got the Spinraza’, and I said ‘Yes’. They were buzzing and so excited … they couldn’t believe it. Mark asked ‘Is it all over?’, and I said ‘I think it’s over’. I think 2020 is going to be good all going well.”

Long campaign
Grace suffers with Spinal Muscular Atrophy (SMA), a genetic condition that affects the nerves in the spinal cord, and overtime children’s conditions deteriorate causing problems with movement, muscle weakness and difficulty breathing and swallowing. There are approximately 25 children living with SMA in Ireland. Before Spinraza was developed, there was no treatment for the condition
Families like the O’Malley’s ran a long campaign calling for Spinraza to be administered. In June, the Minister for Health and the HSE finally approved the groundbreaking drug. However, parents of SMA children were informed that the drug could not be administered due to the lack of beds and hospital staff.
Lorraine spoke of her frustration at the HSE’s lack of clarity about when the treatment would start.
“Our last correspondence from Temple Street was not very positive, and it more or less stated that they couldn’t give us a date. We genuinely didn’t think we would hear anything positive before Christmas. We genuinely thought it would be June or July before we would hear about anything. That is why the news is such a shock,” she explained.

‘Great Christmas’
The email came with the caveat that the administration of Spinraza was subject to the availability of beds in Temple Street Hospital. Lorraine said they accept this but are delighted that Grace is now on the list to start treatment, and they are very hopeful the treatment will begin.
“We had a great Christmas; it was nice to be able to relax and not worry. Hopefully in the next year she will improve because it has been awful seeing her deteriorate. She struggles to lift her head in her wheelchair and her hands get tired.
“Hopefully with the treatment her strength will come back and she will be able to do small things like being able to brush her teeth. It would be great not seeing her get worse.”