Friday 23 March 2018

Bondings: Couple who lost son dedicates their lives to helping Irish parents of sick children

Ade Stack and Marty Curley won a Rehab People of the Year award for providing a house for parents of sick children to stay in, in memory of their late son Hugh

Ade Stack and Marty Curley in the garden of Hugh’s House, which they built in memory of their baby son who died in 2013. Right, work in progress Photo: Gerry Mooney
Ade Stack and Marty Curley in the garden of Hugh’s House, which they built in memory of their baby son who died in 2013. Right, work in progress Photo: Gerry Mooney
Andrea Smith

Andrea Smith

When their baby son Hugh was ill in hospital, Ade Stack and Marty Curley were thankful they lived in Dublin. Throughout their own troubles, they witnessed the struggles of other families travelling from all over the country to visit their sick children, some of whom were unable to cope financially with the expense of accommodation and meals. They were devastated when they saw babies who rarely had visitors because their families lived too far away.

While Temple Street has limited space for parents to stay, it doesn't allow children and the Rotunda has no parent accommodation. Marty and Ade saw how much Hugh loved his brothers Theo and Fred visiting and after he passed away, they purchased and renovated a house on Belvedere Place named Hugh's House to provide accommodation for seven families at a time. They also created a beautiful garden to act as a sanctuary. "We saw marriages break up like slow car crashes with the stress," says Ade. "There were people sleeping on the floor beside their sick children for months with no privacy and nowhere to have a chat."

While they were most deserving of the Rehab People of The Year award they won last night, Ade and Marty are very humble people who don't seek praise. Their own background is that Ade (Adrienne) 44, is from Malahide in Dublin, where she grew up as the eldest of the late Tim and Nora Stack's four children. She studied pharmacy at Trinity College and now owns several pharmacies.

She met Marty, 49, in 2004 through mutual friends. A native of Galway, he comes in the middle of the late Martin and Maura's three children and studied construction management. He is now a self-employed shopfitter.

It was during Galway race week in 2005 that Ade invited him out with her girlfriends, as they were bemoaning a lack of decent men. She soon realised she quite liked him herself.

"I liked Ade because she's independent, strong-minded and very decisive," says Marty. "She's also a good-looking girl."

Ade found Marty easy to talk to and says that while she was more high-maintenance in terms of her appearance when they met, he has brought out her more natural side. He is also laid-back and even-tempered. While they didn't get married, they bought a house, got a dog and then their thoughts turned to having children. Soon they had three boys under three.

Theo is now six, Fred is four and baby Hugh was born at 36 weeks on December 13, 2012, weighing just over a kilo. He spent six weeks in intensive care in the Rotunda and then went to Temple Street Children's Hospital.

"We thought that if we just got him fattened up and eating, he would be grand," says Ade, "but every time we got over one issue, another one cropped up. He had seizures and contracted meningitis and his heart kept going mad and they diagnosed him with cataracts in both eyes at six weeks old. I thought he might be developmentally delayed, but I knew we could live with that. He was a really chilled, happy child with such a strong spirit and he had big glasses, a baldy head and looked like Gandhi."

While Hugh definitely had a neuro degenerative condition, the medical teams in both hospitals were never able to establish what exactly was wrong with him, even post mortem. By April, Ade and Marty sensed that despite their dearest wish that he would make it through, their beloved baby was declining.

"Hugh could always hear my voice when I arrived and he always loved music, but by April he couldn't hear a doorbell and I knew he was going backwards," says Ade, sadly.

"We got to go home at the end of May and we brought him to the Aviva stadium and he loved it because it was so loud, he could hear bits of what was going on. He also loved the sun, his big brothers, baths and eating baby custard. He was rarely in any pain, slept well and was such a happy child."

Beautiful baby Hugh passed away in hospital in August 2013, aged eight months, leaving his parents heartbroken. Ade describes the acute grief like a giant H-shaped hole in her body that nobody else could fill. She had to keep going, though, because she had two small boys who were relying on her, as well as a business that employs 200 people.

"I cried every day for a year, but I had to go back to work two weeks after Hugh died because I was self-employed," she says. "It felt like part of me was missing and I found it hard to process things. I don't know why Hugh lived such a short life, but I know he was very happy while he was here. I miss him terribly and it's still a horrible loss that I feel just as heavily, but the H-shaped hole in my body has gotten smaller as other things have come in around it."

Marty was devastated too, and says he tried to stay focused and keep going for the sake of their sons. One of the things that has helped them both was the establishment of Hugh's House, which aims to give families a home from home while living through some of the toughest times of their lives. The families are referred through the hospitals and their average stay in the house is three months.

There is no charge, all meals are provided and a team of volunteers clean and work in the house. Each beautiful family room has been fitted out and decorated by a family who lost a beloved child, making them very special. Marty and Ade have also acquired an adjacent second house that will be used for daycare, to give respite to families who arrive en masse when a child is dying, for example, but have nowhere to congregate or talk.

"It's currently semi-derelict and we would love if skilled people would volunteer to help us renovate it," says Ade. "We do this not because Hugh died, but because he lived. He was so inspiring as he kept going no matter what was thrown at him.",

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