Derek Neary
Northern News Services

FORT SIMPSON (Jun 25/99) - Tim and Janice McLelland have learned volumes about their daughter Kailah's brain malformation, which is known as "lissencephaly."

But they have still have far to go, literally and figuratively.

With help from the Lion's Club, Metis Nation Local 52 and the Ladies of the Royal Purple in Yellowknife, the McLellands will be bound for Dallas, Texas on Monday for a four-day conference focusing on the rare condition -- only about 20 cases exist in Canada, they said. They learned of the conference in November, but were daunted by the huge expense involved.

"We thought, well, it's a lot easier to go now even though it's so far," Janice said. "We were kind of going on blind faith for a little bit because we didn't know how we were going to swing it."

They decided to save what they could and hesitantly approached a couple of local organizations.

"It was hard to ask for help...it's an issue for some people. But there was no way we could go if we didn't ask for assistance," said Tim.

And assistance they received. The Lion's purchased their airline tickets for them. Metis Local 52 held a benefit bingo in their support. The Ladies of the Royal Purple in Yellowknife somehow heard of the McLelland's plight and donated the remainder of the cost.

"It was incredible, the response we got," Tim said.

Now, thanks in large part to local generosity, they will have a chance to interact with some of the top specialists in the field and get some insight into this mysterious condition.

The McLellands had suspected that something was wrong with their daughter when she was three months old, Janice recalled. Some believed she suffered from colic, but then she began to have seizures, she said. Kailah, now two, was diagnosed with the condition two months later by a neurologist at the University of Alberta. Lissencephaly, it turned out, devastates children's mental and physical development. Most of those with the condition don't talk or walk, some don't even crawl or sit up, Tim said. Although Kailah, who is developmentally equivalent to a two-month-old, doesn't have those abilities, she can eat pureed food (blended daily) and be bottle-fed. Some children with the affliction require feeding tubes, said Tim. What's worse is that the majority of children with lissencephaly die at an early age. Kailah battled through five bouts of pneumonia during her first winter, but, promisingly, didn't have any last winter. There's hope -- two of the oldest living people with the condition, ages 17 and 21, are expected to be at the Dallas conference.

Twenty-five families are to take part in the conference: one from as far away as Taiwan, according to Tim. The McLellands may have met some of them through the Internet, where they log-on to a support group to trade hints and tips that make coping with lissencephaly a little easier.

"It's a big learning curve. Every day is a new thing with her. She keeps us on our toes," said Janice, who added that the seizures, which resemble a severe stomachache more so than an epileptic seizure, vary in frequency and intensity. Kailah takes regular doses of an anti-seizure medication.

One remedy the McLellands will be prepared to promote is melatonin. They recently had the substance prescribed for Kailah by their Edmonton neurologist. Previously, she suffered from irregular sleep patterns, dozing off for a couple of hours here and there, but could go up to 36 hours with practically no sleep at all, said Janice. Since she began the melatonin treatment -- required because her brain wasn't producing the hormone serotonin -- things have improved dramatically, Janice said.

"We were going to get Tim a T-shirt with 'Melatonin rules!' on it to wear at the conference," she said, smiling.

However, Tim noted that not every person with lissencephaly responds the same way to the same treatment.

On Monday, Tim, Janice, Kailah, their healthy seven-month-old son Benjamin and caregiver and friend Tracy Waugh will board a plane for Dallas. No matter what new information they return with, the McLellands have already learned plenty from Kailah.

"She's taught us patience," Janice said.

"She's taught us you can communicate without speaking," said Tim.