Sunday 24 June 2018

'I thought we'd lose our home and the children would end up in care'- Mum on reality of having a seriously-ill child

Devoted mum Adele with her son Alex
Devoted mum Adele with her son Alex

Kathy Armstrong

The mum of a seriously ill toddler has revealed she feared she would lose her home and have her kids taken from her.

Adele Hunter has spoken candidly about the realities of having a sick child in Ireland and claims that parents are often left in vulnerable positions as she alleges there are a lack of supports available.

Adele's son Alex will turn three next month and has already spent the majority of his young life in hospital after being diagnosed with rare Pierre Robin Syndrome, which causes significant facial abnormalities, leading to other health issues.

In Alex's case his airways have collapsed and he has needed a number of procedures, such as having  a tracheotomy fitted to help him breathe and he has started having seizures.

Adele (25) said: "They tried to incubate him with a tube down the neck, and that kept failing; it kept coming back up.

"So the only option we had was for Alex to get a tracheostomy.  He had this inserted in October 2014 and it was reversed in July 2016.

"Alex’s airways have since collapsed again and he is now back in the hospital receiving treatment for his condition.

"It’s so sad.  All Alex knows in his short life is hospitals and doctors. He’s missing out on time with his sisters and being with his family at home."

Alex has spent most of his young life in hospital
Alex has spent most of his young life in hospital

She is his full time carer and is also a single mum to her daughters Alexi (9) and Ava (5).

Adele, from outside of Mullingar in Co Westmeath, said: "I find myself trying to be my three kids' voice and do what's best for them.

"The thoughts of putting Alex in a medical home after fighting for nearly three years to keep him alive isn't right.

"I don't want a six month break, one weekend every two months would be lovely to get respite but I've been told I'm not entitled to tht until he's five.

"If the only respite I'm entitled to is to put him in a medical home then I would hate to see what we would get if we were bad parents.

"Myself and his dad lived in a home for two and a half years, we completed 18 months of training - including tracheotomy training, CPR, peg training, ventilator support.

"I feel that because we were so fully trained we were sent home and forgotten about."

Read More: 'Imagine losing your child and desperately worrying about finding the money for the funeral' - Parents of tragic Cliona (15)

Adele's relationship with Alex's father broke down, which she blames on the stress of their situation.

She said that as Alex gets older he seems to have more medical problems and she doesn't know what his prognosis is.

She explained: "Alex started having seizures this year after Christmas. His body goes into spasms, he shakes, his eyes roll, he goes blue and he sometimes requires CPR.

"Once this happened in front of my other two children, and in public. It was simply terrifying. You just don’t want to leave the house it’s so scary.

"The older Alex gets the more problems arise, I've never met another child like Alex, with the condition he has so I feel like we're all learning from him."

Adele and her ex partner were forced to spend time between Dublin to be near Alex and their family home in Westmeath and last year she feared they would be left homeless when money was tight.

She was put in touch with Cliona's Foundation, which provide financial assistance for non-medical expenses for children with life-limiting conditions.

She said: "There is very little support out there, we couldn't work, we were living in the hospital and for the first two years we didn't even know if our son would live or not.

"Cliona's Foundation are fantastic, my goodness, we went to our social worker with our worries and our concerns and she put us in touch with them.

"Because I'd been let down so much I thought I'd be let down by them but I got home one Friday to see my girls and I came home to the cheque of €1,500 from Cliona's Foundation.

"Myself and Alex's dad cried but this time it was happy tears.

"It was the only support and relief we found, without them we probably would have lost our home, my kids would probably be in care and the whole family would have broken, then and there.

"With the help they've given us we've gotten this far.

"The Cliona Foundation kept a roof over our heads, our girls were able to stay in school and have that routine."

Read More: 'Don't take your kids for granted' - Mum whose daughter Cliona (15) died from cancer

Alex was able to return home for eight months but has been back in Crumlin Hospital for the past two months, Adele has accepted her family may need to move closer but says she wants to know they will have home support if they do.

She is fundraising to cover Alex's medical and care expenses, which she estimates would be around €1,000 per month.

She said: "I want to collect money so that if anyone ever tried to move Alex to a medical home I can take it to court if necessary and have the funds set aside for a carer or whatever else he may need.

"I don't think he would need a nurse because I have all the training, a carer would come in handy for appointments and things.

"Bear in mind I'm a young mum who doesn't drive, I've three children, I'm only 25, I live in the country and I live two and a half hours from Alex on the bus, I feel like I'm trying to be in two places at the same time.

"I think putting him into a home is beating about the bush.

"I'm taking the kids out of school and it'll be a  whole new routine but I still don't know whether I'll get any kind of home support."

She said that she feels there isn't enough State support for seriously ill children and their families.

Adele said: "I feel that a lot of children are let down and if all of us parents got together our voices would be heard.

"I can understand why families don't speak up and it can feel like a losing battle but I'm willing to risk everything I have, my three children.

"No matter whether my son lives or dies I need to fight until all of our kids' voices are heard."

For more information about Cliona's Foundation please visit here.

To learn more about Alex's fundraiser or to donate please visit here.

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