Wednesday 22 January 2020

'Maybe on telly we're big smiles, but our hearts are crushed, we're broken'

After the death of both their children to a rare disorder called Batten's Disease, Mary and Tony Heffernan founded a unique children's ambulance service in their name. While the charity gives them a focus, the couple grieve their loss every day, they tell Chrissie Russell

Mary and Tony Heffernan who lost their daughter Saoirse and son Liam to Batten’s Disease
Mary and Tony Heffernan who lost their daughter Saoirse and son Liam to Batten’s Disease

Chrissie Russell

Mary Heffernan laughs as she recalls a story about the time she left her daughter Saoirse with an unguarded box of chocolates. "I only nipped to the loo but when I came back her mouth was near welded shut with chocolate drool streaming down her face," says Mary. "I said to her 'Oh no! Somebody's stolen the chocolates!' And eventually, when she could finally speak, she looked up at me and said, in all innocence, 'Aw, who took the chocolates ma?'" Both Mary and her husband Tony chuckle at the memory.

Then there's the tale of Saoirse meeting her baby brother, Liam, when he first came home after being born six weeks premature. "He was grand but very small," recalls Mary. "Saoirse wanted to hold him. I said to her, 'You're going to have to be very careful, he's not a dolly,' and she turned around and said, 'But mammy, he's mine'," she smiles. "They were always close."

Those are the happy memories, when the Heffernans were just a normal family. Before hospital appointments and diagnoses, before a time when little Liam would offer to 'be his sister's legs' when she could no longer walk. Before the couple buried first their daughter, and then their son.

The Heffernans' home is full of memories - there are smiling photos of the children everywhere and a little box frame hangs on one wall containing a tiny pair of Liam's first shoes. But Saoirse and Liam's greatest legacy is the incredible children's national ambulance service their parents created in their name: The BUMBLEance.

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As a documentary shown tomorrow night on TG4 will reveal, the Bumbleance is providing a crucial lifeline to more than 300 families across Ireland. Run entirely on charitable donations, the service, which will soon number 13 vehicles and a developing 'Bumbleair' service, covers 32 counties, transporting sick children to and from hospital appointments.

The vehicles - ranging from 'chemo cabs' to larger ambulances - are designed specifically with children's needs in mind, from playful Bumblebee imagery to TV screens, music and soothing LED light displays. Some vehicles have space for up to two adults to travel along too.

"It's like a home on wheels," explains Tony. "The Bumbleance is designed on what a child needs, and to cater for the logistics behind a trip because we've been there ourselves."

In September 2009, Tony and Mary's four-year-old daughter was diagnosed with the rare and incurable condition, Batten's Disease, which affects the nervous system.

Travelling to and from hospital appointments in Dublin from their home in Co Kerry became a huge source of stress as Saoirse would become distressed in the unsettling confines of an adult ambulance. The trauma of her final trip home was compounded by Mary having to drive their own car while Tony sat in the cramped back seat, administering oxygen and medication to their dying daughter.

"When you're in hospital and your child is going to die, being in a regular children's ward with other children running around is a form of mental cruelty," says Mary. "You want to bring them home but the regular ambulance isn't allowed to do it and you're being told there's a high chance they might pass away in the car going home - those are your options."

Five-year-old Saoirse died at home on January 18, 2011. "She hung on for three weeks so we were delighted we'd managed to get her home," says Mary. "She had her final Christmas in her own surroundings with Liam able to climb into bed with her. If we hadn't made that drive she would have just had to die in hospital."

These journeys, known as Angel Trips, form an important part of the Bumbleance service, and try to bring some dignity, privacy and support to a family's darkest hour. Tragically, in 2014, Tony and Mary's son made his own Bumbleance Angel Trip. Despite initially being told he didn't have it, Liam was later diagnosed with the same disease that killed his sister and died at home in his mam and dad's arms on May 4, also aged five years old.

The recent launch of a 12th Bumbleance was attended by some 12 families whose children had made their own Angel Trips in other vehicles. "We allowed everyone to place a heart with their child's name into the back of it," reveals Tony.

"It's a way to keep the conversation alive. They might see a Bumbleance going down the road and wonder 'Is that little Sean's Bumbleance?', it's just a way of keeping the name alive and that's the one thing we kind of crave, people to remember Saoirse and Liam."

"We're still parents," adds Mary. "You can't measure the comfort it gives us to be able to talk about our children."

This week will mark the 9th anniversary of Saoirse's death and family will join them in a small gathering of remembrance. It's hard not to look at other children and wonder what might have been.

"Other parents can talk about their child's progression but our children are forever five," says Mary. "We might have a public persona that's positive, maybe on telly we're big smiles, but our hearts are crushed, we're broken. Even on our happiest day from today until the day we die, there will always be sadness and that's just something you have to carry with you."

The work involved in developing the Bumbleance service is a way of keeping their children's memory alive and has opened up the doors to new friendships with other parents, but it hasn't been an easy route. On average the service needs at least €800,000 every year, "just to keep the lights on" says Tony, and fundraising is a constant struggle. Vehicles need to be sourced and replaced and there are a multitude of financial and logistical challenges to meet. Then there is the emotional toll.

"People will say the charity must be such a comfort to you and you must get so much out of it - and that is true, thinking that we're taking any sort of stress away from any parent is wonderful. But I can assure you, it would have been a lot easier for myself and Tony to just shut our front door and wallow in our own grief," admits Mary.

"What we have created is wonderful and we love it, but we can never be away from the hardship that families are going through with sick children, the desperate stories, going to children's funerals all the time. It's a much tougher path than just turning the world away but it's a world that we chose to step into. We chose to change something that was missing and wrong in the system.

"It's only when you've been in it, that you see the huge gaping holes in the system and, when that happens, you can give out about it and do nothing or you can stand up and be counted and do something about it - that's the path we chose."

  • Tabú: Bumbleance (Aistear Álainn) is on TG4 tomorrow at 9.30p,

Irish Independent

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