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HSE approves Spiranza drug at last

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FAMILY TIES Mums Lorraine O’Malley and Lorraine Mearns campaigning at the Ballinrobe Races last year with their children Grace and Cillian. They are now over the moon that Spinraza has now been approved and their children can now receive treatment for their SMA. Pic: Trish Forde

The mothers of Grace O’Malley and Cillian Mearns shed tears of joy after HSE approves ground-breaking drug Spinraza last week

Anton McNulty

TEARS of joy were shed in the O’Malley and Mearns households in south Mayo last Tuesday afternoon after years of anguish and worry were undone by a Minister’s tweet.
At 12 noon last Tuesday, Minister for Health, Simon Harris sent a tweet which the parents of children in Ireland living with Spinal Muscular Atrophy (SMA) had been waiting for since 2017.
It read: “Welcome news today that Spinraza is now approved by the HSE. This is the first ever treatment for children with SMA. I know how hard the long journey to get here has been for families but very glad children in Ireland will now have access.”
SMA is a genetic condition that affects the nerves in the spinal cord. Overtime, children’s conditions would deteriorate, causing problems with movement, muscle weakness and difficulty breathing and swallowing.
Nine-year-old Grace O’Malley from Hollymount and seven-year-old Cillian Mearns from Shrule both suffer from SMA, and last Tuesday was an emotional day for their parents.
“I was crying, I don’t think I stopped crying for most of the day … happy tears. It was such a relief, the emotion just came out and I couldn’t stop all day,” Grace’s mother Lorraine told The Mayo News.
“My husband Paul came home from work and we went over to the school [Robeen NS] and bought ice-lollies for all the kids. It was one of those days. Grace was crying and couldn’t believe it. Her brother [Mark] was just crying and crying, he is only eight but it was the relief we all felt … at last it was all over. I was like, thank goodness that this day has finally come. The smile has not come off my face.”
Cillian’s mother, also called Lorraine, was at a hospital appointment with Cillian and only heard the news after she turned on her phone, which was buzzing with messages.
“My first phone call was to Lorraine O’Malley and the first question was – are our two babies getting it? She said they were and there was tears everywhere at that stage. Tears of joy for a change. A massive weight just lifted off our shoulders now and we can relax and know we can finally do something for the kids which will help.”

Champagne
Lorraine Mearns’ husband, who by coincidence is also called Paul, was in the US on work business, so she headed for Hollymount where the Champagne bottles popped and they celebrated coming through a ‘long, long tough battle’.
When their children were first diagnosed, the Mearnes and the O’Malleys left hospital with the news that there was no treatment for SMA and there was no cure. They were told to be prepared to witness their children’s health gradually deteriorate.
However in December 2016, they were given hope when the Food and Drug Administration (FDA) in the US approved the groundbreaking drug Spinraza, which was the first approved drug used in treating SMA.
“We heard on the news that the FDA had approved it and obviously we were popping Champagne at that stage, saying it was literally a matter of weeks or months before it would be approved in Ireland. We presumed it was only a matter of waiting, but little did we know we were far from the truth,” Lorraine O’Malley recalled.
Instead negotiations between the HSE and the drug manufacturer, Biogen, proved problematic, with the HSE deeming that the cost was too expensive. It resulted in the parents of children with SMA having to organise a national campaign to put pressure on the HSE to change its position.
The campaign resulted in trips to the Dáil to lobby politicians and enlisting the support of sport stars and celebrities to get behind their struggle. It also resulted in the O’Malleys and the Mearnses having to put their lives on hold to raise awareness of their plight.
“Grace’s deterioration levels were coming on at a rate that we were getting scared,” explained her mum. “I suppose you had to expose Grace in a way which is not fair and not the nicest thing in the world to do. But we had to make people understand how serious the condition is. I never heard of SMA before we had Grace, apart from the milk, and I had to put her out there.
“She did everything she had to do and was just super. She didn’t complain. Well, she did one morning when we had to get up early to go to Cork to be on television with Daithí and Maura. She said, ‘I’d rather go anywhere than have to drive to Cork’. But she kept going and met with Michael Ring and went to Dublin and the Dáil, even though Dublin wouldn’t be her number one favourite place.
“Our whole lives were put on hold, very much trying to focus on getting this over the line. It was such a long journey to do it and we didn’t expect it to be so difficult. It proved to be a long, long tough battle but we are out the other side of it now and I think the relief is unbelievable. Winning the lotto, I couldn’t imagine it would be any better.”

Determined
Both Grace and Cillian are confined to wheelchairs and it was the sight of seeing their children’s health deteriorate before their eyes that made their parents determined to get the drug approved.
Lorraine Mearns described seeing Cillian gradually lose his strength as ‘horrific’ and added they seriously contemplated moving to the US to avail of the treatment.
“We always knew we wouldn’t stop fighting and it would be approved, but there were times in the past when we were confident and he turned around with a ‘No’. It was so heartbreaking that we had to keep ourselves prepared for a no again. It is just so hard to deal with it.
“If it was a ‘no’ again we would have looked at leaving the country. My husband looked into it about getting a transfer with his company to the US if we had to do it. It is a life-saving drug for your child, you just had to do what you had to do.”
A major break-through came last month when the UK approved the drug and it was considered only a matter of time before Ireland followed suit. While the drug will not cure Grace and Cillian, it will halt the progression of the disease and significantly improve their motor function.
“Cillian at the moment can write and swallow his own food and hold his head up and play his computer games and has a reasonable quality of life, but he would lose that if he didn’t get this drug. That is absolutely massive for him and there is a good chance he will regain his strength. The main thing for us is it stops this horrendous progression in its tracks. That is all we can ask for, an improvement would be amazing.”

Community support
Both families say they could not have gone on without the support of their communities and each other and they have been inundated with well-wishes since the announcement was made. They both thanked their respective national schools – Robeen NS and Kilmaine NS – for all the help they have given both Grace and Cillian.
“People you hadn’t spoken to in years were sending messages saying how thrilled they were for us and Grace. I don’t believe unless we had everyone’s backing and support we would be here celebrating,” Lorraine O’Malley said, adding that even the children of the area got behind their campaign.
“I remember getting told a story about a child. He said ‘Mum, I want to give Simon some money out of my Communion money’ and the mother said ‘What do you mean?’. He said, ‘there is a girl in Hollymount that needs medicine and Simon Harris obviously doesn’t have the money to give it to her, so I want to send him the money’. I thought it was so sweet, children are so good. Grace’s friends were equally as excited as we were.”
The two families have become close friends and Lorraine Mearns said that without the O’Malleys’ support they would have found it difficult to cope.
“They have been brilliant for us from day one. They’ve been our confidantes and helped us so much. Everything we’ve been through they have been through it. They have been relentless with the fight, and the strength they have shown has been marvellous.”
The two families have not been given any details about when the treatment will begin, but they believe it is due to begin sometime in July. With the worry and uncertainty now behind them, they say they are both looking forward to normal lives into the future.

MPU Mayo