Mum makes desperate plea to aid young son's battle with rare muscle-wasting disease
But determined Una Ennis is vowing to continue fighting to raise more money until she reaches the target of €3.2m, which would would allow her son Archie (8) get on to a ground-breaking gene therapy programme.
Una also today pleads with the government to allow the rollout of a special medicine called Givinostat, which would help Archie and around 110 other boys in Ireland with Duchenne Muscular Dystrophy slow down the worsening of the disease.
Brave Archie and his mum
She confirms the cost of the drug is horrendously expensive, at €38,000 a bottle per month, but stressed every child's life is priceless.
The healthcare worker from Jobstown in Tallaght, Dublin, along with other parents of Duchenne boys recently protested outside the Dáil about their plight, and met with health minister Jennifer Carroll MacNeill.
'It's absolutely devastating to have this diagnosis for your child and not having access to medicine to treat it. All we want to do is save our little boy,' Una (32) tells the Sunday World .
'If a child in Ireland has cancer, they are given chemo. If a child in Ireland has Duchenne, they're given a wheelchair and a steroid — and it's just not acceptable. How do I explain this to my little boy? Read more
'I hope this medication, if we get it, can give him some hope.
'Givinostat will slow down the progression of the disease. It will keep the boys on their feet for longer. It will give them a longer life expectancy and slow everything down.'
Una and her husband Kenneth (33), who is a sergeant in the army, were given the devastating news about their son's diagnosis late last year.
'For years we thought 'what's going on?' and thought he was just being a little boy and taking his time.
'But when he was struggling to get up the stairs and things started to regress we thought 'something's really wrong here'. Then we got the test results, it was just a nightmare,' she recalls.
Eight-year-old Archie Ennis
The couple, who also have a four-year-old girl, Maisie, were told the devastating effects of the disease, which affects one in 5,000 boys. One in five million girls get the disease, but the symptoms are different and there are no documented Irish sufferers.
'This is a rare genetic condition that will weaken Archie's muscles,' she explains.
'It will start to weaken Archie's muscles in his hips and then in his shoulders. The doctor said that it will progress over time to weaken his heart and his lungs.
'She also told us most boys with this condition will end up in a wheelchair at the age of 10.'
Life expectancy is generally in the early 30s.
'Archie is currently struggling with his splints that he wears at night time. There is a place in America I'd like to bring him, to see if we can get something to suit him,' she notes.
Since news broke of the family's turmoil there has been huge fundraising activities, especially in the Tallaght area and with Alan's army colleagues.
Eight-year-old Archie Ennis is fighting Duchenne Muscular Dystrophy
News in 90 Seconds - August 12th
'The GoFundMe people would donate online but a lot of people have been giving cash, a lot of people have been giving through Revolut, so whenever they give me that money I put into the Archie trust, which will be fully completed next week,' she explains.
'As of now the gene therapy that we originally wanted to go for [in America], there's a lot of symptoms with it, and three little boys have passed away from receiving this gene therapy, which I am obviously very nervous [about] and don't want to give him that one.
'But as time has been going on there's been another gene therapy that's been rolled out and the data on that is meant to be amazing.
'When that is passed, can you imagine the price of that one which is meant to be better than the original one? It's not ready yet but we're going to keep continuing to fundraise until it's out, and then we will be able to get that gene therapy for Archie.
'But I've only got two years because as Archie gets older, he's more prone to an infection that's actually in the gene therapy. If I don't get it within two years then Archie won't be eligible to receive the medicine.'
That is why they want Givinostat in the meantime, to slow down the progression of the disease.
'If the government help us and give us this drug, the boys would stay on their feet a lot longer and live a lot longer,' she stresses.
Una has had to reduced her work hours to keep up Archie's medical appointments.
'If we got €3.2 million we would be one step ahead. We would be ready and waiting for that drug to be passed and we'd be there to get the first dose.'
Donations can be made on the GoFundMe page at https://tinyurl.com/2davss26 or by Revolut @unacl6jg
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Mum makes desperate plea to aid young son's battle with rare muscle-wasting disease
'I hope that this €38k-a-month medicine – if we can get it – will give Archie hope' But determined Una Ennis is vowing to continue fighting to raise more money until she reaches the target of €3.2m, which would would allow her son Archie (8) get on to a ground-breaking gene therapy programme. Una also today pleads with the government to allow the rollout of a special medicine called Givinostat, which would help Archie and around 110 other boys in Ireland with Duchenne Muscular Dystrophy slow down the worsening of the disease. Brave Archie and his mum She confirms the cost of the drug is horrendously expensive, at €38,000 a bottle per month, but stressed every child's life is priceless. The healthcare worker from Jobstown in Tallaght, Dublin, along with other parents of Duchenne boys recently protested outside the Dáil about their plight, and met with health minister Jennifer Carroll MacNeill. 'It's absolutely devastating to have this diagnosis for your child and not having access to medicine to treat it. All we want to do is save our little boy,' Una (32) tells the Sunday World . 'If a child in Ireland has cancer, they are given chemo. If a child in Ireland has Duchenne, they're given a wheelchair and a steroid — and it's just not acceptable. How do I explain this to my little boy? Read more 'I hope this medication, if we get it, can give him some hope. 'Givinostat will slow down the progression of the disease. It will keep the boys on their feet for longer. It will give them a longer life expectancy and slow everything down.' Una and her husband Kenneth (33), who is a sergeant in the army, were given the devastating news about their son's diagnosis late last year. 'For years we thought 'what's going on?' and thought he was just being a little boy and taking his time. 'But when he was struggling to get up the stairs and things started to regress we thought 'something's really wrong here'. Then we got the test results, it was just a nightmare,' she recalls. Eight-year-old Archie Ennis The couple, who also have a four-year-old girl, Maisie, were told the devastating effects of the disease, which affects one in 5,000 boys. One in five million girls get the disease, but the symptoms are different and there are no documented Irish sufferers. 'This is a rare genetic condition that will weaken Archie's muscles,' she explains. 'It will start to weaken Archie's muscles in his hips and then in his shoulders. The doctor said that it will progress over time to weaken his heart and his lungs. 'She also told us most boys with this condition will end up in a wheelchair at the age of 10.' Life expectancy is generally in the early 30s. 'Archie is currently struggling with his splints that he wears at night time. There is a place in America I'd like to bring him, to see if we can get something to suit him,' she notes. Since news broke of the family's turmoil there has been huge fundraising activities, especially in the Tallaght area and with Alan's army colleagues. Eight-year-old Archie Ennis is fighting Duchenne Muscular Dystrophy News in 90 Seconds - August 12th 'The GoFundMe people would donate online but a lot of people have been giving cash, a lot of people have been giving through Revolut, so whenever they give me that money I put into the Archie trust, which will be fully completed next week,' she explains. 'As of now the gene therapy that we originally wanted to go for [in America], there's a lot of symptoms with it, and three little boys have passed away from receiving this gene therapy, which I am obviously very nervous [about] and don't want to give him that one. 'But as time has been going on there's been another gene therapy that's been rolled out and the data on that is meant to be amazing. 'When that is passed, can you imagine the price of that one which is meant to be better than the original one? It's not ready yet but we're going to keep continuing to fundraise until it's out, and then we will be able to get that gene therapy for Archie. 'But I've only got two years because as Archie gets older, he's more prone to an infection that's actually in the gene therapy. If I don't get it within two years then Archie won't be eligible to receive the medicine.' That is why they want Givinostat in the meantime, to slow down the progression of the disease. 'If the government help us and give us this drug, the boys would stay on their feet a lot longer and live a lot longer,' she stresses. Una has had to reduced her work hours to keep up Archie's medical appointments. 'If we got €3.2 million we would be one step ahead. We would be ready and waiting for that drug to be passed and we'd be there to get the first dose.' Donations can be made on the GoFundMe page at or by Revolut @unacl6jg
