Sunday 18 March 2018

It's Our last Christmas with brave little Saoirse

Majella O'Sullivan tells the story of a Kerry family who have set up a charity to do research into a terrible childhood disease that has hit both their children

The innocent words of her little girl made Mary Heffernan smile for a moment. It was September 25, 2009. She and her husband Tony had just been given the devastating news that their four-year-old daughter had been diagnosed with an incurable childhood disease.

As Mary wept, Saoirse reached out her tiny hand and stroked her mother's back. She said quietly: "No sad Mammy, me get better."

Saoirse's promise was all the motivation the family from Keel, Co Kerry, needed to keep fighting.

But now, after more than a year of searching for hope, Tony and Mary have to accept the bitter reality that their daughter is going to die. They have been told by doctors that there is no hope for Saoirse.

Since she was first diagnosed with Late Infantile Batten's Disease, a rare neuro-degenerative condition, her parents have searched relentlessly for a cure. They travelled to a top New York clinic in May where Saoirse was assessed for medical trials.

They were called back to complete the verification process. Surgery was due to take place on October 12, but Saoirse didn't meet the criteria. Medics were assessing a number of children for treatment -- but would only accept those with the best chance of survival.

Not only are the Heffernans preparing for their last Christmas with Saoirse, their little 'Tomboy with a handbag', they also face a very uncertain new year.

Saoirse's two-year-old brother Liam also tested positive for the disease in March this year. They hope that the new treatment which their daughter couldn't avail of will now help their son and halt this cruel disease in its tracks.

"When we were told about Saoirse it was a bolt out of the blue and the last thing we expected," her mother, Mary said. "But we have a coping mechanism that's built into everyone and you come to terms with things.

"We told all our friends not to come to the house crying. Ours was going to be a happy house. We were going to be very positive and make the most of Saoirse's life and do all the fantastic things like Disneyworld.

"So I suppose March 2, 2010, when Liam was diagnosed, was the worst day ever because any glimmer of hope was gone in a second. Even though it was desperate that Saoirse was diagnosed, Liam was the driving force because we thought we would still have him for the rest of our lives.

"Then that was taken, and not only has he got it, but he has it seven times worse than Saoirse."

The Heffernans shudder when they recall the day in Dublin's Temple Street Children's Hospital when they were told that Saoirse was going to die.

"I broke down and Mary looked at me and realised I knew what it was. We were devastated, absolutely broken," Tony recalls. "Mary started to cry and Saoirse rubbed her back and said, 'No sad Mammy, me get better'.

"That was one of the things that kept us positive and kept us fighting. If she could accept it, we'd have to."

Tony set up a charity in November, just two months after Saoirse was diagnosed. Bee for Battens -- The Saoirse Foundation will help fund research into the disease and provide help and support to other families. Little did he realise that one of the next children it would be helping would be his son Liam.

"We were convinced Liam didn't have it but wanted an emotional boost. We got him tested so that we'd know he was fine and then we could plan how we're going to make the most of our time with Saoirse," he says.

"The day we got the results was by far the worst day, even after Saoirse. When you're told your second child has it as well, it's ferocious."

To look at, Liam is perfect, like any other little boy, but the signs are beginning to show, his parents say.

His speech is very limited, his balance is getting worse and he's having 'staring episodes' or 'absent seizures', where for 20 seconds he's just locked and nothing can distract him.

"We have an opportunity, hopefully, to bring him to America in the new year for treatment but that's going to be such a challenge because how in the name of God can we leave Saoirse, knowing her plight? And yet we want to be there for Liam. And if we get the call and we don't take it, that's it," his mother says.

"I just don't even want to think about it, really. It's just going to be horrendous trying to decide who's going to go where, but it's just another thing we'll have to face up to when the time comes."

For now, the Heffernans are concentrating on Christmas, in the knowledge it will be the last one they'll spend together as a family.

"Once we heard that Saoirse wasn't going to make it, all we wanted to do was bring her home for Christmas, just to make some nice memories for ourselves more than anything.

"I know everybody's children are the most precious things they have but there is something exceptional about Saoirse and Liam and I definitely think they were sent to us for a reason and it's a privilege.

"They've brought us many friends and good stuff has happened because of it. It's brought the best out in people," she says.

Despite what faces them, the Heffernans are determined to continue with their charity. Recently they launched a Facebook campaign with the aim of becoming the largest charity on a social networking site.

Tony vows to continue the fight and although Saoirse's not going to make it, her little brother just might.

"There's another little Saoirse out there. She just hasn't been diagnosed yet and all those kids need hope and we'll fund research through the charity," he says.

They're also grateful for a lot of things, most of all that even in her all-too-short life, Saoirse was a happy child.

"She never saw herself as being different to her little cousins," Mary says. "We call her 'the Tomboy with a handbag' and it's the best way of describing her.

"Everywhere she went she had to have a handbag and yet she'd be knee deep in muck outside with her dad, cutting sticks for the fire or helping her granddad on the farm.

"One time it did affect her was the first time she played with her cousins when she couldn't walk any more. Then her little cousin Ava walked up to her and said: 'Don't worry Saoirse, I can be your legs'."

Their biggest fear now is that they know the road ahead, having travelled it already. But for now their focus is on Christmas and making it a special family one.

"We're hoping for a quiet, peaceful Christmas with lots of lovely memories," Mary says. "It's going to be a happy day, I can tell you that.

"It's going to be mad in the morning like any other house when Santy comes, but just to be together and to be able to look back and not have any regrets," she adds.

"There's nothing else we can do but love her and have her here with us and hopefully, the new year will bring some positivity with Liam."

Irish Independent

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