Tuesday 21 November 2017

Why our darling daughter can't be left alone for a minute

Despite her rare illness, brave Emily is a joy to her family, says Celine Naughton

Celine Naughton

In the three years since Emily was born, Caroline and Mike Daly have never had a night out on their own. Even going for a walk around their home town of Croom, Co Limerick, is out of the question as Emily -- who has cheated death several times -- needs 24-hour care.

Born with a swelling around her neck, Emily had her first surgery during delivery by Caesarean section, while still attached to the umbilical cord. She was diagnosed with cystic hygroma and is the only person in the country to have it.

Since then she has had a tracheostomy to allow her to breathe and a peg tube which feeds directly to her stomach. She also suffers from vascular malformation which makes her tongue bleed and has surgery every few months to slow down the flow of blood.

There's nothing wrong with Emily's brain though. She's as playful and curious as any other three-year-old. Along with her two brothers, Colin (11) and Conor (5), Emily brings untold joy to her family -- but it's a joy that comes at a cost.

Mike gave up his job as a mechanic, because looking after Emily and the boys is a two-person job.

"I'd be lost without him -- he remembers appointments, takes the boys to school and does the night shifts every weekend," says Caroline.

"If Emily's tracheostomy blocks we have three minutes to clear it or she'll suffer brain damage. It's a lot to ask anybody else to take on," says Caroline.

"The health service provides a nurse five nights a week which is wonderful -- the nurses are like family -- but outside of those hours, if we wanted a break we'd have to pay for it ourselves and we can't afford it.

"Little things for other people are big things for us. We can't spray furniture polish, air freshener or deodorant as they could aggravate her tracheostomy tube. And it's a day's work to all go out together as a family. It's just easier for one of us to be with Emily and the other with Colin and Conor."

Caroline and Mike get up at 7.30am to let the night nurse go home. With a build-up of mucus overnight, Emily needs a lot of suctioning in the mornings, which takes up to two hours. Then it's the first of five feeds of the day directly into the stomach. Sometimes Emily vomits after a feed, which is a concern as the content could flow into the tracheostomy tube and cause a blockage.

When all that is done it's time to clean the tubes and wash and dress Emily. Mike takes the boys to school. The usual day-to-day activities continue until the night nurse arrives at 10pm.

"Sometimes, that's the only time Mike and I get out to the supermarket," says Caroline. "By the time we get home it's midnight, so we fall into bed exhausted."

Their relentless routine is brightened by the happiness of their three children. And when the Share a Dream Foundation organised a holiday last year for the Dalys to Disneyland Paris, it was a dream come true.

"I didn't think Emily would remember, but she still talks about it," says Caroline.

"Whenever she sees Mickey Mouse on TV, she says, 'I met him in Paris.'

"We never thought it possible, but she taught herself to speak by pressing over the tracheostomy opening with her chin and making sounds.

"The holiday in Paris was fantastic. And the foundation brought us on a weekend to Ballinasloe this year. It was great to be with other families who know what we're going through. And it made us realise how lucky we are. Some of those families have children who are not going to live.

'Sometimes when we're out, people stare at Emily. I don't see the swelling anymore, I just see my beautiful little girl. My sister says Emily humbles everybody with her spirit. My son asked me, 'Why are people staring at her, mum?' and I replied, 'Because she's so beautiful.'"

It's no wonder Emily has won a Children of Courage Award, met the President, and won the hearts of everybody she's met.

Emily and her family are just one of many helped by the Share a Dream Foundation.

The foundation is the main charity partnered with this year's Kerryman Dingle Marathon which takes place on September 4.

For further information on the Dingle marathon visit www.dinglemarathon.ie. For more information on the Share a Dream Foundation visit www.shareadream.ie. You can make a donation at any AIB bank direct to the foundation's bank account: Share a Dream Foundation, AIB Bank, 106/108 O'Connell St, Limerick. A/C Number 21713011. Sort Code: 935247.

Irish Independent

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