TEN-YEAR-OLD Darcy Coyle recently enjoyed a girlie birthday party with nail-painting, cake and music.
It may sound like an ordinary celebration but the brave little Loughbrickland girl had made an extraordinary achievement in reaching her tenth birthday in June.
Darcy was born with Neonatal Adrenaleukodystrophy (NALD), a genetic and incurable condition, and her family were told she would not make it to the age of ten. She has complex medical needs - she can’t speak, walk, see or hear fully and is the only sufferer with the condition in the whole of the UK that the family knows of.
But her mum Janet said her wide smile and infectious laughter have brightened up their lives like nothing else. The mother-of-three gave up her business in Country Fried Chicken in Dromore three years ago to become a full-time carer for her youngest daughter. And together with her husband and children Jade (19) and Joshua (17) they provide a loving and supportive home for Darcy, who has just begun another year at Donard School.
“We’re very lucky at the minute that Donard is able to look after her for five days a week,” said Janet. “It’s very hard work and it’s very intense. We rely very much on a daily routine.”
Daily life for the Coyles changed dramatically when Darcy was born following a difficult pregnancy. “It wasn’t a straightforward pregnancy,” said Janet. “I suspected something was wrong in comparison to my other two pregnancies which were easy.
“But even at that you presume - everybody presumes - that your child is going to be ok, especially when you have two that are healthy. You don’t realise that it can happen to you and your family. She was underweight and we knew at 21 weeks there was something wrong but I had no idea it would be as severe as it was.”
Each day is dictated by Darcy’s medication routine which involves 11 different types of drugs given during a 12-hour period.
“Every day’s the same to Darcy, there’s no such thing as a weekend, a Saturday or a Sunday,” said Janet. “She’s up early every morning and her medicine routine starts at 7.30am and continues until 8pm at night. It’s a 12-hour day. She’s on 11 different drugs a day, some are four-hourly, some six-hourly, some once a day, some twice a day. That’s all as well as five-hourly tube feeds. Her day is planned out for her.”
Such an intense daily routine means Darcy must be supervised at all times, and Janet says she is very well-supported by her family. But it is local services such as Donard School, and especially the Northern Ireland Children’s Hospice which the family recently raised funds for, that provide the respite care they so badly need.
They are only ever able to take a family holiday if they arrange care at the hospice or with carers with at least four months notice. And even then there is always a chance Darcy’s condition legislates that they do not feel able to leave her.
“You hope that when you book your holiday and arrange for care for her that she will be well enough when the four months come,” explained Janet. “Because you don’t know what’s around the corner. You hope and pray that she is alright and she is healthy enough so you know she is going to be happy in her own home or in the hospice.
“Myself, my husband and the two teenagers were lucky enough to get away this year. In that case Darcy went to the Hospice for five days. We also had a very special married couple who’ve cared for Darcy for many years. They cared for her in our home for two days.
“A carer from Hospice at Home also provided support. The hospice is like a holiday to Darcy - she always comes back very chilled out and happy.”
The family gets six days of respite care every three months, when Janet is able to bring Darcy to the facility, settle her down to sleep and leave safe in the knowledge she will receive top quality care and therapy.
“They have a hydrotherapy pool, jacuzzi baths, sensory rooms and equipment as well as music, art and pet therapy,” said Janet. “It’s just fantastic. It’s so cheerful, it’s a happy place. This is what people sometimes don’t realise. You hear the word hospice and people think you’re going to be in a very dismal, sad place but it’s not like that, it’s fantastic. The whole atmosphere when you walk in the door is happy.”
The experience the Coyles have had with the hospice - including their Hospice at Home service where carers visit the house to offer support - has motivated them to raise funds to ensure other people are able to enjoy the same facilities in the years to come.
“It is so important that people continue to raise money to keep these kinds of services going, especially in the current climate when people really don’t have as much money to give to charity.
“The hospice is a life-saver for the family unit of a child with a life-limiting condition. It keeps the normality going and you know they are going to look after her so well - you’re not worrying all the time because you know how good they are and all the great services they have to offer.”
While Darcy may not be able to communicate like most other children her age, she is a loving child with a lot to offer, said her mum - who also credited the Community Children’s Nurses and carers, and Banbridge nursery Child’s Play for helping with her daughter.
“She’s happiest when she’s sitting on your knee being nursed,” said Janet. “When she’s in the middle of a group of people talking, sitting looking up into your face - she loves that. Human contact is so important to her. And even though she has visual and hearing problems she knows if you’re not in the room with her. And, like any other child, she’ll let you know if she’s not happy too,” she laughed. “She can barge and give off and let you know about it. And when she’s happy she smiles and laughs. She has an infectious laughter and quite a good sense of humour, she’ll laugh at the strangest things.
Facing the fact Darcy has a life-limiting condition is difficult, Janet said, but the family is determined to make sure she’s happy and content and continues to defy the medical odds.
“We were told she would not see her tenth birthday - that was the news we were given by a Proximol Disorder specialist in England a few years ago,” said Janet. “So it’s great to prove the specialists wrong, we’re obviously doing something right. What we’re doing must be right to make her happy and comfortable. And all the help from the hospital staff and carers adds to that.”