Life finally free of seizures

TRANSFORMATION: Kaiapoi 11-year-old Tayla McKeown making friendship bracelets in her bedroom with her mother Sue McKeown.
TRANSFORMATION: Kaiapoi 11-year-old Tayla McKeown making friendship bracelets in her bedroom with her mother Sue McKeown.

Sue and Mat McKeown will never forget January 14, 2010 - the day of their youngest daughter's first epileptic seizure.

It was Sue McKeown's first day back at work after the Christmas holidays and Tayla, 7, and Cassidy, 10, were at a holiday programme.

"We got a phone call saying she'd had some form of seizure," Sue McKeown said. She rushed Tayla, now 11, to her doctor in Kaiapoi, but they couldn't be seen until later that afternoon.

"In that time she had five seizures in front of me," she said.

"We were lucky enough that she had one in front of the doctor."

A scan at Christchurch Hospital revealed a 7 centimetre by 4cm growth in her head.

"It was absolutely huge. I just thought, ‘Tumour'. I saw this big mass and automatically thought, ‘Cancer', but they said, ‘No, it's a cyst'. It had been there since birth."

By the time Tayla had surgery a month later, the mass was 8cm by 5cm and 250ml of fluid came out. But unfortunately, it didn't work, McKeown said.

"The seizures came back."

In the next few years doctors trialed various medications to try and help Tayla, but, "It didn't matter what we did. No medication was helping."

For Tayla, it was a "scary" experience. "My tummy starts to tingle and then my mouth starts filling up with saliva. I black out."

Each time it happened, her parents felt helpless.

Their once "perfectly healthy child" would start playing with her fingers and drooling and "just looked through you".

"It was just horrible. You couldn't do anything," Sue McKeown said.

Early last year, Tayla was referred to Starship children's hospital in Auckland, where doctors studied further scans of her brain.

"They discovered that where the cyst was, her brain had never developed properly [and] to put it in our language . . . the brain was shorting out on itself," McKeown said. Doctors suggested removing a quarter of Tayla's brain - the right temporal lobe, in a process called a lobectomy.

"We were like, ‘How can you take some of her brain out?' They did that and . . . success. Our last appointment at Starship was before Christmas and the doctor was like, ‘She's doing incredibly'. I think we're lucky that they have, hopefully, found a solution. We were treated like royalty."

After having up to five seizures a day, Tayla is slowly gaining the confidence that comes with being seizure-free for six months.

"If she gets butterflies or nervous, she thinks it's a seizure coming on. I think it's still hard for her to get used to," McKeown said.

The transformation, however, was incredible. "She was always too scared to go swimming, because she had seizures in the swimming pool. She would never go out and play, because she was scared. She isolated herself from everybody and everything for so long." Four years on from her first seizure, Tayla busies herself making friendship bracelets and has a funky hair-do inspired by singer Pink.

Flicking through a girly-pink record of her treatment, she's philosophical.

"Things happen in life."

On Monday, she's getting on a bus with Cassidy to visit their grandparents in Oamaru for a week. While Tayla down-plays her experience, her mother's excitement is far less contained. "Holy moly. She has never been able to do that before. That's huge."

The Press