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Wednesday 29 January 2020

Baby Lucy's family need €90,000 to transform her life

 

Darren Wall, Eva Smith and Elaine Smith with baby Lucy
Darren Wall, Eva Smith and Elaine Smith with baby Lucy

Simon Bourke

Elaine Smith's pregnancy was a normal one. There were no scares, no signs that her baby was anything other than healthy and thriving.

Even when Lucy was born on July 23 of last year it wasn't initially clear that anything was out of the ordinary.

'The pregnancy was normal all the way through,' Elaine says. 'She was born at 38 weeks, and there was no indication anything was wrong, not until she was born.

'When she was born she had this scar on her face which was actually a blood clot. They didn't think it was a blood clot, they thought it was a skin graft and when they did tests on her they found she had ​s​evere brain damage and cerebral palsy.

'They didn't know the cause of it. There was no neglicence. It was just one of those things.'

Having been moved to Our Lady's Children's Hospital in Crumlin, Lucy had a number of scans and tests before Elaine and partner Darren Wall were informed that their new-born daughter's future was uncertain.

'The doctors sat us down a couple a days after the scans and told us ​to enjoy our time with her as she has a life-limiting condition, we were told by her doctors that she wouldn't be able to hear, see, walk or eat solid foods,

'They didn't have a time on it they said it could be two weeks or two years. There was nothing they could do for her, she has her condition and that's basically it,' Darren recalls.

Amazingly the couple were allowed to return home to Bridgetown with Lucy in early August, less than two weeks after she'd been born. And having been told she would require round-the-clock care they decided Elaine would leave her job in a solicitor's office in Taghmon to become Lucy's full-time carer.

'We didn't really think about it, that was just the way it had to be. You wouldn't feel comfortable leaving somebody else do it,' Elaine says.

Darren's circumstances also had to change. 'As a bus driver with Bus Eireann I had to request for work close to home so that I could care for Lucy and attend various different appointments. Bus Eireann have accommodated me with a school run for which I am very grateful and I hope they will continue to do so,' he says.

Now 16 months old Lucy has since developed scoliosis, a curvature of the spine which has led to her being fitted with a full-body cast. In addition she is fed via a peg which, because of the risk of choking, means she must be watched at all times, 24/7.

'Lucy is able to see but can't focus, she can hear though. ​She is a little miracle and fighter,' Darren says.

'Anytime she coughs if she's not able to get it back down she could choke. She doesn't sleep, she won't sleep for a full night, she might do an hour at the most, here and there.'

Yet the couple, along with their other daughter Eva, say they have simply adapted to their new lives, Lucy just a normal girl who requires a little extra help.

However, in order to ensure she receives optimum care Elaine and Darren need to redesign their home accordingly.

'She requires a bedroom with a wet room off it, and it needs to be fairly big because she'll have a lot of equipment,' says Darren.

'Also she will need a tracking hoist for the ceiling, as she will never walk. And we need to build onto the living-room as well so she can come in and out.'

None of this will come cheap.

'It could cost between €80-90,000 we don't know fully,' Darren continues. 'To get the planning we have to upgrade the​ septic tank which is another €10,000, the building work alone is up over €60,000 and then to get the tracking hoist it could be anywhere between €10-20,000.'

A trio of events; a benefit night, a hunt organised by Killinick Harriers, and an auction in Rathangan Parish, have got the ball rolling for Elaine and Darren and they say they are indebted to those who have helped so far.

​'We would like to thank Rathangan Parish Committee and everyone who was involved in organising the night and to all the performers, the local businesses and individuals who kindly donated prizes and also to the Killinick Harriers who organised the hunt and auction and Rathangan Bar who held the auction on the night,' Elaine says.

They have set up a go fund me page at www.gofundme.com/f/lucy-walls-fundraiser and say that the proposed amendments to their home would literally 'transform' all of their lives.

For the time being though they rely upon the help of family and friends along with the Jack and Jill Foundation and Resilience Care. There is also one other person who gives up much of her free time to ensure Lucy is constantly cared for and looked after. Her sister, Eva.

'It was tough for her at the start because Lucy was born in Wexford on the Monday and on the Tuesday we went to Dublin thinking it was only a skin graft,' says Elaine. 'Eva came up on the Thursday after being told the extent of it and she was very emotional to be honest.

'She didn't want to go to school at the start, she wanted to be at home here all the time. She's a second mammy I'd say, no one else could touch Lucy when she was born. Eva was very protective of her little sister Lucy.'

With Christmas on the way the family say they will spend the day with close family where Lucy will be doted on by her loved ones.

Wexford People

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