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'I had missed his fourth birthday with being in hospital and here he was comforting me'

A new awareness campaign aims to raise funds to help so-called “shadow children”.
May 9th 2017, 6:06 AM 17,754 1

THE NEWS THAT a child is critically ill is incredibly difficult for any parent to handle, but what about the other children that those parents have?

A new awareness campaign aims to raise funds to help those so-called “shadow children”.

Founded in 2007, Cliona’s Foundation is a charity which provides financial assistance to families in Ireland who have children undergoing long-term medical treatment for critical illness.

Funds are used to pay for the ‘hidden’ costs, including accommodation, food, petrol and other miscellaneous expenses incurred by families who take sick children to hospital for frequent treatments.

Cliona’s Foundation has supported non-medical expenses for 400 families who have a child with a life limiting condition in 29 counties across Ireland.

The Waters Family

image002 The Waters family.

Maria Waters from Castlebar, Mayo is the mother of three children; Rhianna (9), Oisin (4) and Shannon (8 months). When Shannon was born in June 2016 she was immediately transferred to Our Lady’s Hospital in Crumlin where she was diagnosed with a rare and complex heart condition that requires ongoing monitoring treatment and major surgery.

She says the issue has affected the whole family.

Siblings of critically ill children are hugely impacted. We’ve just got home for the first time since Shannon was born eight months ago.

“With Rhianna, me being away from home has definitely affected her school work, up until now she’s never had problems with school work, her behaviour and personality completely changed. She became quite cheeky but since we’ve been home she’s been as good as gold like a different person.

With Oisin he became really upset missing us. He was hysterical and always wanted mommy. He has been so upset with major crying fits in playschool. He was lashing out a lot in playschool and we had parents complaining about him because he’s even left a few other boys in bruises.

“I’m so worried he will get branded as a bully and the teachers all know that that’s not him.”

When Shannon was only eight weeks old, she went into cardiac arrest. Maria says that Oisin was there at the time.

“I started crying and Oisin he looked up at me and said “Mommy don’t cry Shannon is going to be okay”.

I couldn’t believe it I had missed his fourth birthday the week before with being in hospital with Shannon and here he was a four year old comforting me!

Maria says the family are able to compensate now that they’re home.

“Now that we are all at home again myself or my partner will try bring them somewhere fun at the weekend. It’s hard to get the time to all do things together but we have applied for nurses so hopefully we can get granted to have them for five hours in the week and this can then be our time for fun with Rhianna and Oisin.

Cliona’s Foundation are fantastic, I didn’t hear of them before all of this. Because my partner was self-employed he was off work for 7 weeks. The bills were piling in and with two other young kids at Christmas just around the corner, things didn’t look as bleak. I applied to Cliona’s Foundation and literally two weeks I later I got a cheque in the post. It was honestly like winning the lottery.

The Gardiner family

image006 The Gardiner family.

Caroline Gardiner, from Kilkenny is the mother of Rachel (9), Jack (7) Charlie (6) and Dylan (5). When Dylan was born at 27 weeks and at just 750g, the odds were not in his favour. He has a complex medical history which resulted in him spending over two years between Holles Street and Crumlin hospitals.

Caroline says the issue has most affected her eldest child, Rachel.

To me my eldest daughter Rachel is the most affected since Dylan was born. It was her first year at school and there was lots of things I feel she missed out on and it even comes back on her now, after school activities were unheard of because I wasn’t there, we didn’t have friends over to play so I think the knock on effect on her was probably more dramatic than it was for the boys.
She missed out on Irish Dancing and swimming classes with her peers and by the time she was able to start these classes she was behind from her peers.

She says the family have used funding from Cliona’s Foundation to pay for respite care for Dylan.

“All our savings and more had diminished due to long term hospital admissions and distance from home to Dublin so we are not in a position financially to fund au pairs or any outside help. Cliona’s Foundation has greatly supported us. We were not expecting anything like the donation they gave us and have gladly used it for respite hours.”

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