herald

Wednesday 22 November 2017

One year on, family's heartache for Saoirse

THE family of a little girl who died from rare Battens disease will mark her first anniversary by watching DVDs of her.

Tony and Mary Heffernan's beautiful daughter Saoirse (5) passed away on January 18, 2011 after battling Battens disease, a rare neuro-degenerative condition, for more than a year.

Tony told the Herald yesterday that the family have been remembering their little girl by watching her on family DVDs and by visiting her graveside.

"It's tough every day but around this time it's a lot more sensitive, and we get a lot of support from the family because of course they think of Saoirse especially on her birthday and her anniversary.

"It's sad. We called in to Saoirse's grave today, we still do that two times a day.

"We watched DVDs from our family holidays when she was running, swimming and jumping around the pool, and that was so tough."

More than 100 people will attend Saoirse's anniversary mass next Saturday in Keel, where musician John Spillane, who played at Saoirse's funeral, will play again.

Little Saoirse died after Battens disease caused her to lose her sight, mobility, speech, and eventually all her bodily functions.

Her parents Tony and Mary are shielding their only son Liam (3) -- who also has Battens disease -- from the sadness of Saoirse's anniversary.

"He's doing okay. He doesn't know that the big day is tomorrow, so at the moment he thinks it's a normal day. We'll shield him from the sadness.

"We'll measure ourselves in how we help other children with the disease and if we find a cure. I won't rest until we do. And at the moment, Saoirse's name will be kept going."

hnews@herald.ie

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