HAPPY TIMES Grace O'Malley with her brother Mark in Disneyland with the Make-A-Wish Foundation earlier this year.
Minister responds at last, but child’s health is failing fast
WHEN a mother has to tie her nine-year-old daughter’s pony-tail to the head-rest of her wheelchair to ensure her head doesn’t fall forward, it is no wonder she is concerned that time is running out.
Almost three months after seriously ill Grace O’Malley from Hollymount wrote to Minister for Health Simon Harris about her muscle-wasting condition, Spinal Muscular Atrophy (SMA) Type 11 – and after front-page coverage of the story in this newspaper – she finally received a reply in the days leading up to Christmas.
Minister Harris wrote that he was ‘really sorry’ to discover that Grace had sent him a letter and that he ‘hadn’t written back’. In fact, his department officials had returned three pictures she had also sent. The pictures, which showed Grace in Disneyland on a Make-a-Wish Foundation holiday, were sent to Grace in an empty envelope, without even an acknowledgment of her letter.
Poignantly, the letter the child wrote to the minister was the last handwritten letter her debilitating disease allowed her to write. Written on unicorn paper, her letter pleaded with Minister Harris, asking him to approve a groundbreaking drug, Spinraza, to save her life. Significantly, the drug is available in 20 other European countries.
From the heart
In her heartbreaking letter, Grace explained that she found it difficult to write as a result of her condition and even struggled with putting toothpaste on her toothbrush or holding cutlery.
“I love school but having trouble with writhing (sic), this is why I am asking you please there is some medicine to save my life. All other countrys (sic) in Europe have it,” Grace wrote.
The Robeen NS pupil told the minister that she ‘can’t handle any more appointments’, has had three operations and hates hospitals.
“I wish I could have it [Spinraza]. I am so sad. We are not giving up ever. Please give us Spinraza. PS please wright (sic) soon.”
Minister Harris’s response explained that the reason the photographs were returned related to departmental rules. In a warm-toned letter, Harris wrote: “I can see you are a fan of unicorns but there are some rules around letters with photos in them here in the Department which mean I didn’t get to see the photos you sent. I hope you had a fun time in Disneyland.”
Continuing, he wrote: “Minister Ring has been in touch with me about you and I know it is miserable waiting for a decision on a drug which means so much to you and when you are so unwell. I know the people who deal with this in the HSE are working hard and I hope there will be news early in the New Year.”
Speaking to The Mayo News yesterday (Monday) Grace’s mum, Lorraine O’Malley said: “Grace was delighted with the letter from the minister and wants to keep it in her memory box.
“It is very positive that the minister responded to her letter, but we hope now that he will act on providing the drug, as we were under the illusion that a decision would be made [about the availability of the drug] before Christmas.”
The O’Malleys have been deeply touched by all the support they have been shown in Ballinrobe and throughout the county through fundraisers and more. However, Grace’s condition continues to progress without the drug and her health continues to deteriorate, and so time is of the essence. The family plans to keep on the pressure for a speedy resolution.
“In November we were informed it would be introduced on a managed-access basis, but apparently the guidelines needed to be reviewed, so we are now waiting on a decision to be made at the January meeting of the HSE Drugs Group. Our worry is that this committee will approve it, but the Government will then have to find funding for it. With the recent deterioration in Grace’s neck muscles – when she is tired I have to tie her pony tail to the head-rest of her wheelchair to keep her head upright – we need to go full-steam-ahead with immediate effect,” Lorraine O'Malley said.
Friends of Grace page on Facebook.