Would You Believe?

Navigating Heaven and Hell

Navigating Heaven and Hell

Sunday, 29th March at 10.35pm on RTÉ One

None of us knows how we would react to a diagnosis of terminal illness in a child but Tony and Mary Heffernan were not only faced with that nightmare once but twice, when by some cruel twist of fate, both of their children were found to have an extremely rare congenital neurological disease called Batten's.

Since then, the Heffernan's have been tireless in their efforts to help other parents and children who have found themselves in the same dreadful situation. They have founded three organisations: Bee for Battens, Bumbleance and Liam's Lodge, now all under the banner of The Saoirse Foundation. Their work in this area was recognised last year when they were given a prestigious People of the Year award.

What happened to the Heffernan family is something most people find challenging even to think about. In 2009, Tony and Mary's lives were turned upside-down when then 3-year-old Saoirse, started suffering from seizures. Initially thought to be epilepsy, they nursed their daughter while medics tried to find the correct cocktail of drugs to control the symptoms but nothing was working and the seizures were eventually convulsing little Saoirse up to 200 times per day. Finally after much investigation and agonising waits, Batten's was diagnosed and they were told it was fatal.

They worked as a team to keep family life as normal as possible with Mary banishing tears in the house. As they struggled to come to terms with the steep learning curve involved in minding their little girl at home, they also fund-raised and organised their charity, informing others about Batten's. Then came the double whammy - Liam who had not exhibited any symptoms at all, was also diagnosed with the same rare condition.

How does any parent navigate their way through such circumstances? Mary and Tony searched tirelessly for any possible cure for their precious children. They found experimental trials in Cornell in New York - unfortunately too late for Saoirse: she passed away on January 18th, 2011. Liam did benefit from having had the brain surgery involved in the American trials for a while. This joyful reprieve was not to last however, so despite the improvements in his quality of life, Liam made, what his parent's call his "angel trip" - his last journey home from hospital - in the Bumbleance. On May 4th, 2014, he too passed away aged only 5, just like his big sister.

In this episode of WYB, this remarkable couple talk frankly about how they are trying to steer through the pain and loss they are experiencing. Tony continues to work diligently in the charities they have founded in their children's honour and they are both now also involved in forming government policy for the national rare disease plan for Ireland.

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Every parent's nightmare is to lose one of their children. Mary and Tony Heffernan have gone through that dreadful trauma not once, but twice - when their two young children succumbed in turn to a rare congenital disease.

Since then, the Heffernans have been tireless in their efforts to help other parents who have found themselves in the same dreadful situation. They have founded three organisations to help those is need - and their work was recognised last year when they were given a prestigious People of the Year award.

In this edition of WYB, we explore the effect of the death or terminal illness of a child on its parents, and examine the response of one couple to their bereavement.

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