21
Sat, Sep
21 New Articles

No Government love for Grace on Valentine’s Day

News

LIVING IN HOPE Grace O’Malley and her mother Lorraine of Malley are still waiting on news with regard to Spinraza approval.  Pic: Tara Carney Hynes

Áine Ryan

IT turned out to be a Valentine’s Day from hell for the parents of little Grace O’Malley (9) who has been awaiting on a HSE decision for five months on the availability of a life-saving drug for her muscle-wasting condition, Spinal Muscular Atrophy (SMA) Type 11.
Heartbreakingly, her mum, Lorraine now has to tie her ponytail to the head-rest of her wheelchair to ensure her head doesn’t fall forward as her disease progresses.  
The Hollymount family had been told by Government Minister of State at the Department of Health, Jim Daly that ‘a decision would be made by the HSE senior leadership team’ last week but the silence became deafening as they lit candles of hope last Thursday, Valentine’s Day. Their emotional messages – along with the 24 other families dealing with the challenge of SMA – went unanswered on this dedicated day when the concept of love is celebrated.
“It was the worst day of my life,” a desperate Lorraine O’Malley told The Mayo News yesterday. “It was worse than the day we sat in the waiting-room for Grace’s diagnosis – at least we were going to get an answer that day.”
Add to this heartbreak, Grace’s innocent comment: “I hope the Government shows us some love today.”
Texting local TD, Minister Michael Ring last Thursday morning at 7.45am, Lorraine wrote: “Sorry [for] messaging so early, [I] just couldn’t sleep last night with today being the day for the decision on Spinraza. I would be so grateful if you would let me know as soon as you hear any news on a decision today. Thanks, Lorraine.”
There was no reply to this text. At 3.44pm, Lorraine wrote again: “Michael, I’m finding today harder by the second. Even worse than the day we got Grace’s diagnosis. Is there any way you can just give us any news. I know it’s not you making the decision, it’s the HSE. Are we going to hear the outcome today?”
Responding, Minister Ring said: “We are all waiting to see what this committee will say.”
Praising Minister Ring’s efforts on their behalf, Lorraine O’Malley said: “When speaking to Minister Ring on two occasions he has been kind enough to assure us that he is doing all he can to help us and has been in close contact with Minister Harris regarding a decision on  Spinraza.”
Under questioning  by a number of TDs in the Dáil earlier this month, Minister Daly said: “As I stated in the House yesterday the meeting of the senior leadership team is due to take place next Thursday when this matter will be discussed. This is not to say that it will be agreed there but the recommendation has come up to the the senior leadership team. They will meet on Thursday 14, February.
Following further questioning, he said: “I can confirm that the HSE leadership management will meet on February 14 at which it is hoped it will come to a final decision on this. That is not to say the drug will be made available after that date. It is not within my gift to make it available, but it is hoped a decision will emerge from that meeting on February 14.”   
Opposition leader, Micheál Martin also raised the issue in the Dáil last Wednesday, stressing that the delays in providing Spinraza were unacceptable  while  children and their families were being ‘forced to suffer unnecessarily’.
“Approximately 20 European countries [the latest Scotalnd] have already approved the drug. The delay here is unacceptable. There is significant evidence from countries across the world, and from clinical trials, that Spinraza is changing children’s lives significantly, slowing down muscle wastage and, in many cases, allowing muscle strengthening to occur which allows them to live a much more active, healthy life,” he said.
A Mayo News query regarding the outcome of the HSE meeting about approval of the drug had not received a response at the time of going to press.