TEARS & TRIUMPH

Born with Batten disease, Lisa Archer’s daughter Katie was 10 when she passed away. The extremely rare brain condition had stripped her girl of her eyesight and hearing, as well as the ability to breathe on her own or have any control over her body.

“Katie was four when she was diagnosed,” says the Aucklander, who is also mum to Caleb, 14, and Amy, 12. “There’s currently no cure for it. You get diagnosed and you die, normally by the age of 10. When there’s nothing you can do for your child, it’s heartbreaking.”

When Cure Kids got in touch with Lisa a few years ago, inviting her and Katie on a trip to Queenstown, it was like they’d found a second family. However, the best part for Lisa was learning the charity raises funds to research Batten disease.

“Even though the whole journey with my daughter was awful, nothing could change that, so I held on to the fact Cure Kids is trying to do something about it,” says Lisa.

Having the organisation at her side kept Lisa sane throughout the harrowing six-year ordeal, she explains.

“The charity’s core role is to fund research into childhood illness, but they do other stuff like delivering meals, sending little care packages when you’re in hospital or phoning you up.”

When Katie passed away earlier this year, not long before Lisa’s marriage ended and she turned 50, the accountant promised herself she’d aspire to make every moment count.

“I was nervous about today because having photos on your own is scary,” she tells. “I’d never had my hair and make-up done, but that’s partly because I’d much rather be outside gardening!”

However, in the past few years, Lisa’s approach to new experiences has changed. “Katie had a passion for life. If you ever asked, ‘Do you want to ...’ she’d put her hand up before she even knew what you were going to say!” Lisa laughs.

“When Cure Kids asked me to do the photo shoot, I thought of Katie and it made me go, ‘Actually, why not? You’ve got to enjoy life.’”