Monday 10 December 2018

'We would live in a caravan if it would bring Katie back'

SUPPORT FUND: Alice Nugent outside her home at Ballinlough Castle, Co Westmeath.
SUPPORT FUND: Alice Nugent outside her home at Ballinlough Castle, Co Westmeath.
Katie Nugent who died aged six from Lukemia on right with her sister
Niamh Horan

Niamh Horan

Behind the majestic stone walls of Ballinlough Castle in Co Westmeath, a lord and lady live with their young family in a 17th-Century dwelling by a picturesque lake and woodland.

On the walls, paintings of generals and aristocracy peer down, the plush floral furnishings and dainty tea set, silverware and box of war medals entirely in keeping with the grand historic home fit for a princess.

It seems like the picture-perfect life for Lord Nick and Lady Alice Nugent, who have lived here for over 14 years.

But there is an unmistakable sadness behind the lady of the castle's eyes as she speaks of her life with husband Nick and her small family, Lucy (11) and Lara (1), on the grounds of the country estate.

The lake behind her sits perfectly still as she recalls the life that once bounded into it. The woodlands to her right catch a glimmer of sunlight, and are a constant reminder of what has gone before.

Resting on the grand piano in the corner of the drawing room, a small black-and-white photograph of a happy-go-lucky girl captures in time their little child lost at the tender age of six.

It was the spring of 2009 when her mother noticed something wasn't right.

"She had sore legs, night sweats and a loss of appetite. She was a happy, sunny girl who would never complain unless something was wrong.

"We took her to the doctor on a Friday and were told we could either bring her to casualty that day or come back the following Tuesday and enjoy the sunny break away that we had planned. So that's what we did. And it turned out to be the right decision in the end."

Following blood tests, Katie was diagnosed with leukaemia and the family's life changed forever. Katie's world went from one of a happy-go-lucky five-year-old who enjoyed hurtling down the hill and splashing into the lake with her older sister, Lucy, to a frightening realm of drips and chemotherapy in Our Lady's Children's Hospital, Crumlin, in Dublin.

"The doctors were amazing but it's your worst nightmare. Until you go into it you don't just understand it."

Despite the turmoil, Katie was always brave, never complaining of her illness. Time passed and after battling through to remission, Katie and her family returned home with the knowledge that 90pc of children with that particular strand of cancer go on to beat the disease.

But as her mother says: "Luckily, I always took statistics with a of a pinch of salt. If 90 children survive, 10 still die, and each person is different."

It was nine months later when Alice knew once more there was something not quite right with her daughter's health.

After returning to hospital, Katie endured several more rounds of chemotherapy, until eventually the family were told the prognosis wasn't good – she had relapsed – and had two weeks left to live.

"The doctors said we could keep going but it wouldn't give her a quality of life and she would probably end up dying in hospital," Alice recalls.

Katie being "an old soul" knew she wanted to come home and see out her final days at the castle.

On the night she left the ward, a wheelchair was brought to transport her to the car.

Lady Nugent scrunches up her face mimicking her little girl's defiance: "She said: 'I'm not having that' and made me sit in the wheelchair so she could push me out."

"She was dressed head to toe in yellow, like a lemon sherbet and I just remember looking back at her. . ." her eyes fill up without warning and she trails off.

"But her last two weeks here were wonderful. Lucy was amazing with her. We laughed a lot, we had wheelbarrow races on the lawn, ice cream in the village, she had a night nurse who she played tricks with, like spreading sneezing powder, even if it was to sing 'if you're happy and you know it' at four in the morning, we did it all."

"One day she said to me: 'Mommy, I know I am in a lot of pain but I'm very lucky to be surrounded by people who love me, because not everyone has that.' I thought it was a very profound thing to say for someone so young."

Katie passed away on a spring day in 2010 surrounded by family and friends. Her resting place now sits under a tree in the woodlands.

Looking out the window, Alice describes how "we cut back the trees so we can see a pathway through from here, and she can look down on us. We feel she's around."

Every year the family throw the gates of their castle open to the public for the 'Body and Soul' music festival, which draws thousands of revellers from around the country.

"The bizarre thing was that the festival was coming up a month after Katie died, so at that stage there were people around building the stage and bog cottages and it was a very spiritual time. It was a source of comfort."

Another project the family have used to channel their energy is the setting up of the 'Katie Nugent Fund', which provides families of children undergoing oncology treatment with emotional and psychological support.

"Whether you're child gets better or dies, it's a very scarring process. There was amazing support in Crumlin but there's only so much they can give on the psycho-social side."

The fund has raised €600,000 so far. The annual duathlon is taking place this October and the organisation allows you to create your own events to raise funds.

These days laughter has filled the house once more – a new addition to the family, one-year-old Lara, can be heard playing in the kitchen.

Alice rises from her chair to give a tour of the beautiful surroundings but as she says with a sad smile: "You know, we would happily spend the rest of our days living in a caravan if it would bring Katie back."

You can find out more about the Katie Nugent Fund by logging on to www.katienugentfund.com.

Irish Independent

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