HAPPY TIMES Grace O'Malley with her brother Mark in Disneyland with the Make-A-Wish Foundation earlier this year.
Photos returned in empty envelope without any comment
THE Minister for Health Simon Harris has failed to acknowledge photographs and a letter from a seriously ill little girl asking him to approve a groundbreaking drug to save her life. The child has since lost the ability to write – her letter to Minister Harris was one of the last handwritten letters she sent.
Nine-year-old Grace O’Malley who suffers from Type II of muscle-wasting condition Spinal Muscular Atrophy (SMA), wrote to the minister to tell him about the reality of her illness, and she included pictures of her in Disneyland on a Make-a-Wish Foundation holiday.
Grace who is from Robeen, outside Hollymount, also asked Minister Harris to help approve the drug Spinraza, which could stop her condition from progressing further.
‘I am so sad’
“Grace sent him a letter on unicorn paper, with three pictures in it. A three-page letter which she struggled writing and he literally took the pictures out of it and sent them back in an envelope with no acknowledgment of the letter or anything,” Grace’s mother Lorraine explained to The Mayo News.
In the letter, Grace explained that she finds it difficult to write as a result of her condition and even struggles 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, and that is why Spinraza can help her.
“I wish I could have it [Spinraza]. I am so sad. We are not giving up ever. Please give us Spinraza. P.S please wright (sic) soon.”
Three weeks after Grace sent the letter she received an envelope containing the pictures that she sent, with no note or any reference to her letter.
Lorraine said Grace was left unsure about whether the minister had read her letter at all.
“Grace said ‘I wonder did he read my letter?’. I was disappointed for her, as I thought he would at least write back when she asked him.
“Grace has now lost writing ability and has recently started using assistive technology in school for her writing. This is one of the last long letters she has handwritten.”
Lorraine has said it is ‘heartbreaking’ that she and other families with children with SMA will not hear any news about accessing the drug until next year.
The drug is the first treatment for the life-limiting condition, which affects mainly infants and children.
After a gruelling campaign to access the drug, Lorraine was eventually told last week by Minister for Rural and Community Development Michael Ring that it would be 2019 before any decision would be reached about the approval for the drug.
As the news sunk in that there would be no decision about the life-changing drug before the end of the year, Lorraine became ‘distraught’.
“I just broke down. It was so draining, the preparation that goes into presentations and the campaign. I know hospital beds are important, but what makes the kids with SMA any less important? I question, do they [politicians] even know the seriousness of the condition?”
She continued, ”I thought we would be moving into the new year with great news. I couldn’t believe it.”
For the mother of two it has been very hard to hear that the drug has been approved in other countries.
“We heard today [Monday] that it’s been approved in Poland and I’m wondering why they can’t approve it here. You go through so many emotions.”
Minister Ring was contacted for a comment in relation to the drug-approval process but he declined to comment.