Mums Who Inspire

Mum creates a legacy for her children following their fight with rare disease

As part of our Mums Who Inspire series, we sat down with Mary Heffernan to learn about her inspirational story of love and loss. If you have a story that you would like to be featured, email mumswhoinspire[at] 

Mary Heffernan is a mum-of-two who knows all too well how hard life can be at times.

The youngest child of a postman and housewife in Kenmare, Co. Kerry she had no idea what hand life was going to deal when she met her future husband Tony.

Tony, a ship’s captain, married Mary in 2001 and the couple began to travel the world, sharing special memories during life at sea.

However, their time for travel came to an end in 2005 when the couple’s first child was born.

Mary gave birth to a beautiful baby girl, Saoirse, who was joined three years later by baby Liam, and their family life in Kerry was complete.

But in 2009, Mum had noticed that three-year-old Saoirse didn’t seem herself. 

“I was always aware that she was a big child for her age, she had reached all her milestones, she did have delayed speech but she was learning, she was walking, but I noticed she started to become clumsy.”

And then it happened; January 2009, little Saoirse took a seizure. That was the beginning of the couple’s nightmare, as nine months later it was confirmed their daughter had Battens Disease.

Saoirse’s was the first known case of the disease in Ireland, therefore leaving the parents with little knowledge of what to expect for their daughter.

“We had no one to turn to, no one to ask. We just wanted to protect and cure her. We couldn’t accept nothing could be done.”

Upon hearing Saoirse’s diagnosis, the parents petitioned to have Liam tested for the same disease, which they were granted in February 2010.

Sitting in Temple Street Children’s Hospital, the heartbroken couple didn't want their children to see their sadness, deciding that no other family in Ireland should have to go through the same situation. 

While they knew they had no cure, they felt they could help guide other families.

March 17th 2010, ‘Bee for Battens’ (now Saoirse Foundation) was launched; an online site for parents who can source information about the disease and finance entitlements amongst others. 

And unfortunately, the first person to avail of their charitable work was their two-year-old tot Liam who was also diagnosed with the disease.

“It was a surreal experience; it’s very rare to be told that both your children have it, it was the darkest day of our lives.”

“Our whole family was wiped out; our future hopes and dreams for our children gone. It was almost worse this time because we knew what was ahead of Liam.”

Saoirse passed away at the tender age of five in 2011, with Liam leaving this world to be with his sister in 2014, also aged five. 

“It should never be the case that you bury your child,” stated Mum. 

The loss of both children left the couple in a natural state of devastation, however, the inspirational mum insists:

“It’s extremely hard, you never get used to it. But you have to accept it, you can’t live in the past.”

“I’ll carry my children with me, life is a great gift, you learn how precious life is, and you have to do something with it to make the world a better place.”

The Saoirse Foundation has grown in stature, focusing on Bee for Battens, BUMBLEance and Liam’s Lodge.

Bee for Battens concentrates on developing research around the disease, informing children and parents on the illness, while BUMBLEance is the national ambulance service for children in Ireland.

Liam’s Lodge is still in the pipeline, but the couple are hopeful they will get the go-ahead for the respite house this year.

However, Mary credits her husband: “As a wife and a mother I am proud, I am proud of Tony for everything, he never puts himself first, he’s so driven.”

Nonetheless Mary has a strong message to share, which she hopes won't be taken for granted, telling MagicMum:

“Talking. I talk to parents everyday. I talk about my children everyday. It’s so nice, we’re going back to the same memories, but they’re the memories we have.”

Mary believes talking to one another, through times of hardship, illness and bereavement, can be the difference between a good day and a bad day.

“Time is the greatest currency we have, give a person a little bit of time, it’s the only thing in this world you can’t get back.”

“Have a chat and listen; it could mean the world to someone, it’s so important and it’s just a quick chat.”

We can't argue with Mary, it is true; a cup of tea and a chat can mean the world to someone even if it is a quick five minutes, and most importantly, always listen.

You can text 'Buzz' to 50300 to donate €4 to BUMBLEance. 

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