A couple who lost both their children to Batten’s Disease and are the drivers behind BUMBLEance, will renew their vows next month in a poignant ceremony, writes CHRIS DUNNE
DESPITE losing his two precious children, Saoirse and Liam, to Batten’s Disease, a rare fatal neurological disease, Tony Heffernan says that he is the luckiest man alive.
“I am the luckiest man alive to have met my wife, Mary,” says Tony who, together with Mary, founded the Saoirse Foundation and Bee for Batten’s, after the death of their beloved daughter.
The couple are renewing their marriage vows next month.
“Batten’s disease is hereditary,” says Tony. “Mary and I are both carriers of the gene.”
Saoirse grew her ‘angel wings’ aged five, on January 18, 2011. Liam joined his big sister on May 4, 2014.
The Saoirse Foundation was set up in March, 2010, in honour of Saoirse and also the Bee for Batten’s project, which supports people living with rare diseases across Ireland.
“When Saoirse was diagnosed with Batten’s disease, we had no information about it or how to care for our daughter,” says Tony.
“We felt isolated and alone. Mary and I didn’t want other parents to go through that.”
BUMBLEance, the Heffernan’s baby, is Ireland’s and the world’s first inter-active ambulance service designed specifically for children.
Driver Jim Burke, welcomes me aboard. “The vehicle is kitted out for everything a child could want,” says Jim.
The BUMBLEance is the most modern ambulance service on the planet, complete with 19 inch LED TV, PlayStation, games console and iPad mini. It is kitted out with sensory lighting, with NUBI systems, and wi-fi allowing internet streaming and Skype calls.
“There is an extra seat for mum or dad, or another family member,” says Jim, reaching up to reveal a shelf full of story books for children who prefer to read on their way to the hospital for treatment.
“And the BUMBLEance has wheelchair accessibility. It provides a safe and comfortable journey for the children.”
Fota Wildlife Park, where I meet the BUMBLEance team, is bitter-sweet for Tony. He remembers his last trip here with Liam.
“Liam was so excited when he came to Fota and he was really taken with those giraffes on the way in,” says Tony, pointing out the real-life giraffes outside the cafe that welcome visiting families from home and abroad.
“Liam made his last trip home, his ‘Angel Trip’, in the BUMBLEance.
“We brought him home to die,” says Tony.
He and Mary were not lucky enough to see their children grow up.
“There were no First Communions for us,” says Tony. “No college or Debs. We’ll never have grandchildren. All that played on our minds. Every hope and dream you had for your kids died with them. Saoirse and Liam were truly loved.”
Joy, laughter and fun were the magic words in their house.
“Mary banished tears from the house,” says Tony.
“Our children were loved and cherished every day. Saoirse and Liam got everything they wanted. They may not have had a long life, but they had quality lives,” says Tony.
“Saoirse was a real people-person. She had a wooden spoon that she used as a magic wand. If she saw another child upset or crying in the supermarket, she would wave her magic wand and everything would be all right.
“They got all they ever needed from their loving mother,” says Tony.
“Mary had a great way with them. The most valuable currency we have is time with our kids.
“We always wanted to have four children,” adds Tony. “We were blessed with our two.”
Tony and Mary will be blessed again 16 years after they were married when they renew their wedding vows next month with close friends and family in Castlemaine, Co. Kerry.
“It’s just a simple ceremony,” says Tony. “Liam died in 2014, on our 13th wedding anniversary. Unlucky 13. Mary and I will celebrate our anniversary by renewing our wedding vows in September.”
Their beloved children rest nearby where the poignant ceremony will take place.
“Saoirse and Liam are buried in Keel cemetery, the little graveyard close to the church,” says Tony.
He grew up in Cork, where he did his Masters in CIT. His stomping ground was Blackpool and on his grandfather’s land in Knocknaheeny. But he found love in The Kingdom.
“I loved fishing,” says Tony, who was in the Merchant Navy and who forged a successful career in shipping.
“My grandad had a Kerry connection and Sneem on the Blackwater was great for fishing. I was in my teens when I spotted Mary. She was working in a local deli and she made the best sandwiches. I was in and out and then we got together. I stayed around the shop and it paid off!”
The couple became an item in 2001. It was a fairytale romance and the world was their oyster.
“We travelled the world together,” says Tony.
Their happiness soared when Saoirse was born in 2005.
“She was Kerry gold,” says Tony. “Saoirse was a real sweetheart. She loved the dogs and the outdoors.
“She was a bit of a tomboy; a rocket on the trampoline. She had a lovely temperament. She never cried or had a tantrum. Saoirse would win top prize in a charm contest.”
She was tall for her age.
“When she was five years old, she was wearing clothes age nine to ten,” says Tony.
Life was sailing along nicely. Tony was a senior officer and he travelled back and forth from Korea. Nearer home, he worked in the UK and the Isle of Man. “When Saoirse came along, I didn’t want to do as many long stints abroad,” says Tony.
The Heffernans were on a crest of a wave. When Liam was born six weeks early on July 3, 2008, their happiness was complete.
“He weighed 2 kilos. He was very small and we all loved him.
“I had landed my first job in Ireland for a long time,” says Tony. “It was back to what I knew.
“Being with Mary and our extended family was great. Life was set. We celebrated our first Christmas as a family of four.”
But stormy waters were stirring. Saoirse had her first seizure on January 19, 2009. During her short life she would experience seizures up to 200 times a day.
“There was no warning,” says Tony. “We phoned the doctor. It was thought Saoirse had an allergy. When she had a fully blown seizure it was frightening. Her lips went blue.
“Then Saoirse had one seizure a month; then one week during all of June and July. Epilepsy was suspected. When that was diagnosed, we celebrated a joint birthday party for them both on Liam’s first birthday and we went on a family holiday.”
The happy occasions were blighted by Saoirse’s ill-health.
“Saoirse had a serious of tests and an MRI in Temple Street,” says Tony.
After an agonising wait and much investigation the family received devastating news.
“We returned to Dublin after six weeks,” says Tony. “I remember it was All-Ireland finals day. Liam stayed with his granny.”
On September 25, 2009, at 12.45pm in Temple Street Children’s Hospital, Tony and Mary got the awful news that their only daughter who had brought such happiness into their lives, had a fatal incurable disease, Batten’s Disease.
“There were a team of doctors and Junior doctors around Saoirse’s bed,” says Tony. Mary was beside the bed. I was at the bottom. We were told Saoirse would die.”
Saoirse didn’t do sadness.
“No sad Mum; me get better,” she said.
The Heffernan’s lives were turned upside down, tossed and thrown to the wind, they had to remain calm.
“We phoned our in-laws,” says Tony.
“I put on what I call my Norwegian head, where I went into another gear. Our world was crushed. We still had to carry on. We had a house, kids, and bills, just like everybody else. ”
None of us know how we’d react to a terminal illness in a child, but in a cruel twist of fate, the Heffernans faced the agonising situation twice. The couple nursed their daughter while medics tried to find the right cocktail of drugs to control the symptoms. Nothing worked.
Struggling to come to terms with minding their little girl at home, the couple also fund-raised and organised their charity, informing others about Batten’s.
Tony and Mary work tirelessly in their efforts to help other parents and children who have found themselves in the same situation under the banner of the Saoirse Foundation.
“The people of Cork and Kerry gave us fantastic support,” says Tony. “They put the fun back into fundraising.”
Lightning struck again, landing the close-knit family into further turmoil.
“Liam, who had not exhibited any symptoms at all, was also diagnosed with Batten’s,” says Tony. “We decided to get him tested for peace of mind.”
While it was too late for Saoirse to undergo experimental clinical trials at the Weill Cornell Medial Centre New York, Liam became the youngest ever child to undergo pioneering brain surgery.
The foursome had celebrated their last Christmas together. There was no time to grieve. Liam had a chance at a longer life.
“He was a fighter, and he had us on his side,” says Tony. “The Federal rules changed governing trials, allowing Liam to participate. The gene transfer medical treatment required six holes to be drilled into his skull, nine hours in theatre. There were 12 treatment procedures carried out on Liam’s brain.”
The treatment didn’t save Liam’s life. But it did extend it.
“Liam was chasing pigeons down 1st Avenue in Manhattan two days later,” says Tony. “His speech improved and he was back doing jigsaws. He loved dinosaurs and he had lots of happy hours playing with them. He was a typical boy, climbing up tables and walls. He had a soft side too. ”
Liam loved his big sister too.
“When we were flying to the USA, Liam looked out at the clouds and he asked; ‘Are we near to Saoirse’s house?’”
The couple were thrilled with the precious time they had with their son. In April he got an infection that set him back. He didn’t make it.
“Liam met his neurologist on November 3,” says Tony. “Dr Olivia O’ Mahony, in Cork, who was brilliant to Liam, gave him six months to live. He died six months and one day later.”
How does any parent navigate through these cruel set of circumstances that robbed them of their little girl and their little boy?
“You don’t,” says Tony. “You move forward.” Mary and Liam propelled themselves forward, founding Bee for Batten’s, a networking system for parents. And they came up with the idea of BUMBLEance. The vehicles, now numbering six, have travelled thousands of kilometres up and down the country, bringing sick children in comfort, safely to their destination for medical treatment.
“Not one cent is charged to families. It is simple,” says Tony. “It caters for kids.
“BUMBLEance is there for those who need it. We wanted to create a bubble of happiness for the kids. Mary created a bubble of happiness for our kids. Every day was perfect.
“When Saoirse travelled to hospital by ambulance, we thought it was so clinical; like a big fridge. BUMBLEance lets the kid be a kid and the parent be a parent.”
It has been a tough journey. Tony and Mary have helped countless families throughout the land. How have they done it?
“We are a good team,” says Tony. “Like all couples we have our moments. But we are tight.” Tony and Mary will mark their epic journey in a country church in September near to where their story first began. Tony smiles.
“I’m still the luckiest man alive,” he says. “Everybody has to climb their Mount Everest.
“We just went up a different way.”