Profile in Irish fighting courage - Heffernan’s campaign for respite care for families dealing with fatal rare illnesses such as Batten’s disease
Posted on Sunday, May 19, 2013 at 08:06 AM
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|Tony and Mary Heffernan with their son Liam.|
The next time I think of fighting Irish spirit, when your back is against the wall and when all looks hopeless yet somehow a grace and courage comes, I’ll think of Tony and Mary Heffernan.
Tony, 41, from Kerry, and his wife Mary, 37, from Cork, have been dealt the most grievous blow life can throw at them.
One of their two beautiful children, Saoirse, succumbed to a deadly and incurable neurological disease called Batten Disease, and now their only surviving child Liam, just four, is also facing death from the same disease.
I met Tony over breakfast at Fitzpatrick’s Hotel last Saturday morning in New York. A former ship’s captain, he was abroad when Saoirse suffered the first of a mysterious series of seizures which was ultimately diagnosed as Batten Disease.
It was the beginning of a journey into the heart of darkness, watching their angelic daughter fail from the disease, hoping against hope for a miracle cure which included a New York hospital stay.
Alas, Saoirse passed away in 2011, but the family was hit with a second hammer blow when little Liam was also diagnosed with the fatal disorder.
Faced with such circumstances many couples would give up, go screaming into the night, curse the heavens and let life do it worst to them.
But not the Heffernans. They have woven a golden tale of commitment, love and sacrifice from a web of broken dreams and dashed hopes.
They were both in New York last week for the American Ireland Fund dinner, not looking for sympathy or concern but rather to tell their story of Liam’s Lodge, their $6 million project aimed at helping other families all over Ireland who have children with incurable diseases and who desperately need a place of respite to stay when dealing it.
“Mary and I wished there was a facility like this for people like us, to give people the break they need. It is not a lot to give people a week’s break to help them to keep going through the year,” Heffernan explained. “Hopefully, Liam will get to see this open, but it's against the odds for him to survive more than 12 to 18 months."
Tony pauses for a moment. “I know I’ll soon be carrying another little white coffin” he says, his voice breaking. “I just hope no other family in the future will have to go through what we have gone through.”
Located outside Tralee and close to Kerry General Hospital, phase one will see an initial 10 specially designed units of Liam's Lodge constructed to provide a week of much needed respite for 520 families each year.
“In the longer term it will grow to 30 units on our site, supplemented by a number of satellite lodges around Ireland. The service hopes to be helping over 1,600 families a year in the near future,” Heffernan says.
The response and support had been tremendous in Ireland, with generous donors flocking to help the concept of Liam’s Lodge.
Tony and Mary have created Bee for Battens (www.beeforbattens.org), a powerful network throughout Ireland and soon they hope in the United States to battle the terrible disease, help those who have it and eventually find a cure which Heffernan remains confident can be done.
“We know it’s a steep climb,” he says, “but we know Saoirse our little angel is with us and that Liam would want this too, so that other children would never suffer like they have.”
I make it a point of never asking readers to be generous in my columns, but I really feel this is an amazing couple truly doing extraordinary work. They can be reached through www.beeforbattens.org. See more: Irish News Blog
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