Jack Quann
Jack Quann

15.56 12 Nov 2020


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An anonymous donor is giving €5,000 to a mother of three sick children, who shared her story with Lunchtime Live.

Áine's husband died in June at the age of 51 following a massive heart attack.

The couple have four children: one who was diagnosed with cancer - who is since in remission - and three others with a degenerative disease known as mitochondrial disease.

The children also have three different levels of autism.

Áine explained that their youngest daughter has severe autism and is non-verbal - her husband Gerry was her carer.

She said she had been asking for respite for her daughter since June.

She told Lunchtime Live: "At the start of the year, our 17-year-old got diagnosed with cancer - lymphoma stage two - and we were dealing with that and him having chemo.

"And then in the midst of that happening the lockdown happened, which did not help for three children with autism - especially one that's non-verbal.

"And then in the midst of that my husband died suddenly one night, and myself and my son had to try and revive him.

"And he was gone. I had to bury him within two days because of having children with a degenerative disease and autism.

"And I was left completely and utterly on my own.

"From a system we asked nothing from - because we took care of our children ourselves - not being martyrs, just feeling that people that were left on their own that really needed respite could avail of this.

"So there was two of us, so we decided we could do it ourselves.

"But when I ended up devastated and in this situation, I had nowhere to go with it.

"There was nothing - no emergency respite, nothing in place for someone in my situation.

"It was absolutely dire, and then there was the COVID".

On her husband's passing, she explained: "My husband passed away on the 17th of June - he was completely fine.

"We were watching a movie, he went in to have his Indian that he made - his curry.

"He got a pain in his neck - he said to me 'I've got a pain in my neck, I'm just going to lie down'".

"He went in to lie down in there, he just said it was a pain in his neck - he reckoned it was the way he was lying.

"I wanted to ring a doctor-on-call [and] he wasn't having it.

"My son was in bed cause he was after having the chemo, I just got a really bad feeling.

"So I went looking for him and when I got him my son went out and said 'He's breathing weird'.

"And when I got him, it was literally within 10 minutes, he was dead."

"They reckon an aneurism in his neck caused a blockage, and that he had a massive heart attack".

"He was my daughter's carer - I'm the carer for my other two children.

"Because in Ireland, which is a disgrace, you're only allowed be carers to two of your children - even if you have three sick children."

Áine said she was not sure where to turn.

"I went to the school, the school were very good. And they tried to get, through the Brothers of Charity, to get respite.

"But the whole problem was there's only a house for two children: three when there's no COVID, two when there's COVID.

"So I had absolutely nowhere to go."

'It might give her a boost' - Anonymous donor offers €5,000 to help mother with sick children

00:00:00 / 00:00:00

    

'I was a walking corpse'

She said she has nearly crashed her car twice due to a lack of sleep.

"My daughter won't sleep since her father died, because her father was her life and she was his.

"So she's afraid to close her eyes, and because she's non-verbal it's very hard to get through to her - she was afraid I'd be gone.

"Because he put her to bed that night, she never seen him the next morning and she never seen him again.

"And she wouldn't go asleep - so I was literally a walking corpse.

"I literally couldn't mourn my husband because my daughter was crying, hitting me, hitting out, everything because she wanted her daddy and could not ask for her daddy".

Áine said she now has two nights of respite a week, which she is very grateful for.

"It's two nights and I'm very grateful, there's a big change in her - except she's still lashing out."

But she said there is no margin for error with this set up.

"The big problem here is if this happens again.

"For instance... I had a hernia and I ended up in hospital last month.

"They said to me 'We need to take it out the next morning' - I said 'You're joking me', and they were like 'No' and I said 'I can't stay... I have three autistic children, I can't stay here.'

"So now I'm walking around with the same pain, because I have nowhere to go with my children if anything happens."

'I exist for them'

"If I get COVID, God forbid, if I get COVID I am screwed.

"I will literally die in this house on my own because I have nowhere for my children to go."

"And the bottom line on all of this is there is no emergency care for situations like this, for parents and families like mine, when something goes wrong."

"I need them to put more money into children with disabilities and stop treating them like second-class citizens because they're not.

"Look at them for the situation or live my life for one day and see that respite is needed - it is important, it's essential for parents and families and especially one parent families that are left on their own with children in these situations.

"The money needs to be there, there is no emergency, there is no care there, when something bad really happens.

"They need to look at this, look at it properly and start realising the devastation this causes to families like mine when they have nowhere to go, they can't be sick cause there's only one parent.

"They need to put the help out there in place - because the money is put everywhere else except where it's needed.

"People with children with disabilities did not ask for these situations.

"They didn't go and plan to have a child with a disability, and that's the way I feel it's looked at."

"I'm here, to be honest, and that's it. I'm here from my children.

"I'm very lonely, I'm very sad, but I'm here - I exist for them.

"I lost my best friend, the love of my life truly, and so I'm just here and I exist."

"It's hard enough trying to exist - and even with Christmas coming up and his birthday coming up - without having to fight tooth and nail to get the things you need and the support you need."

Since then, an anonymous donor has got in touch with Newstalk and is offering her €5,000 to "give her a boost coming up to Christmas".

In an e-mail, the generous donor explained: "My friend has autistic children, and Áine's story resonated with me because of that.

"She mentioned that she has three autistic children, and that her husband had died. He was the same age as myself.

"I felt a cash donation might help. It might not purchase a lot and I don't mind what she spends on.

"It might give her help purchasing respite, or toys. It might give her a boost coming up to Christmas."

Main image: Áine (centre right) and members of her family

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