Wednesday 23 January 2019

Father's Day 'so difficult' after pain of losing my darling Saoirse

The dad of a little girl who died from the rare Batten disease is facing into "an extremely difficult" Fathers Day tomorrow.

Saoirse Heffernan captured the hearts of the nation while bravely battling the disease, suffering regular seizures before losing the ability to walk and communicate and then slipping into a coma in December.

Her dad Tony has been focused on getting groundbreaking treatment for his son Liam, who also has Batten disease but now Father's Day will bring back the pain of his loss.

"It's going to be extremely different this year. It's the first time being a father to just Liam and not Saoirse and Liam.

"I don't know how we're going to do it, but we're going to try and make the most of the day.

"Emotionally it'll be very difficult to celebrate it after losing Saoirse. We won't be making a big fuss. It's very, very difficult to explain to people but Saoirse's loss is now coming home to us.

"She's a little darling. I just wish she was here and that we could be a normal family and have the normal worries in life. With rare diseases, it's not easy to concentrate on anything else."


Liam's speech and diet are improving since he underwent an operation in New York which involved drilling six holes in his skull to allow gene transfer treatment to be administered.

And while Tony and Mary pray that Liam will be fully cured, they miss their little daughter desperately.

"Even when you're writing birthday cards for other children in other families, and when you're not signing Saoirse's name anymore, it's very hard.

"We all hope Liam will live, but I don't think we will ever get over the loss of Saoirse. Some people say to us that Saoirse is gone to give Liam a chance but that's no consolation to us. I'd love to have her here.

"She's there with me every single day, but I'm still getting a Father's Day card from only my son."

Tony, Mary and Liam will visit Saoirse's grave for Father's Day, just as they've been doing every day they've been in Ireland since she passed away.

"I can't change it. It's nobody's fault. Myself and Mary didn't do anything wrong. It's just that genetics dealt us a very horrible situation. I'm just going to focus on Saoirse when she was well and not sick."

Donations can be made to the Bee For Battens charity at Allied Irish Bank, Main Street, Kenmare, Co Kerry, account number 06040095, sort code 93-63-24, or go to

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