'All I want is to give her the life that she deserves' - Mother of ill toddler tells of poor living conditions

'All I want is to give her the life that she deserves' - Mother of ill toddler tells of poor living conditions

A mother has told of the poor living conditions in which her family and her 19-month-old toddler who was born with half a heart are "stuck" in.

Mother-of-four *Karen, whose appeal for a bedroom for her vulnerable toddler which has fallen on deaf ears up to now, spoke to presenter Paul Byrne on the Neil Prendeville Show on Cork’s RedFM 104-106 this morning.

Karen currently lives in a two-bedroom house with her mother, sister, brother, and four children. She shares a bed with her three sons aged five, seven and 12.

Her toddler who suffers from hypoplastic left heart syndrome and is vulnerable to infection sleeps on the floor.

Karen said that the home is overcrowded and she desperately wants space for her daughter to protect her against any potential illnesses.

"I just want her to have her own room because when she' goes into hospital in December, they basically told me that she won't be allowed home unless she has a room of her own because there are too many infections that she can pick up.

"There's eight of us stuck in two bedrooms, between my mom, my sister, my brother, me and my four children," she told Paul.

Karen said that "people from City Hall, councillors, and TDs" inspected the house but she has not heard anything.

"I've had people from City Hall, I had councillors, and TDs out to inspect the house and they've all written in, they thought it was so overcrowded, and I've heard nothing, absolutely nothing."

"I'm on the housing list myself 11 years and I've not heard from them once."

She said that living conditions are not good for her daughter and that wintertime is a particularly difficult period as she is so open to catching an infection.

It's not good for the simple reason that if any of us in the house have any sickness she picks it up and she could be in the hospital for weeks or months on end.

"Wintertime is really bad for her because she can pick up everything and anything. A simple head cold or flu can kill her, it's fatal for her.

"When I'm in a shopping centre I have to have the plastic over the buggy constantly in case she picks up anything and then I have people looking at me going "why has she the plastic over the buggy in the shopping centre?"."

Karen said that her "whole life turned upside down" when she found out that her newborn daughter was born with hypoplastic left heart syndrome.

"I didn't know what to expect. I didn't know was she going to survive was she not going to survive.

"When she was born she looked absolutely perfect, you wouldn't believe there was anything wrong with her."

The now 19-month-old had to undergo three open-heart surgeries after she was born, her first at just one day old.

She underwent her second operation at three months old and the third at just six months old.

"She's been in and out to Crumlin and to Cork University Hospital. She's 19 months, nearly 20 months and she's been in and out 16 times between the two hospitals," Karen said.

"She's up in Cork University Hospital every week at appointments and she's once a month up in Crumlin."

Karen said that she constantly worries about her daughter's health and wants to give her the best possible life that she can, while she can.

"It's killing me because all I want is for her to live her life the way she can live it but she can't do that at the minute where we are.

She's got no life expectancy whatsoever. The doctors told us to take it day by day.

She said that taking a break from her mother's home or staying at a friend's with her daughter because is "too risky".

Karen worries that she could end up in the hospital for good with her daughter if she was to pick up anything it could be fatal for the toddler.

"If I had at least my own room for her I could put her in isolation away from the rest of the family that are sick, then at least I won't have to worry about her picking up something.

"I wouldn't have to worry about not seeing my kids for months on end when I'm stuck in hospital because there are no kids allowed on the wards so that means I'm not able to see them and they're not able to see me.

"All I want is to give her the life that she deserves while she has one," she said.

*Karen's name has been changed to protect her identity.

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