‘Where does something like this come from?’

BY SARA KEDDY

Kings County Register



Dana Kenneally watched Lyam get off the bus just before Christmas in their Garland driveway.

“He fell four or five times coming up the driveway, and I just said, ‘What’s the problem?’” Dana remembers.

Lyam, eight years old, said he couldn’t walk, and his dad told him to “pick up your feet, boy.”

Within a few days, Lyam couldn’t walk around the house without holding on to furniture and walls, and he’d lost control of his bodily functions. The family’s doctor checked him Dec. 21 and they thought it was a urinary tract infection.

“Then, it was Christmas, and we were looking on the internet to find something - a big mistake,” Angela Kenneally says. “It was a pretty scary Christmas.”

Back at the doctor’s Dec. 27, they went on to a pediatrician in Kentville, Lyam had a CAT scan and they went right to Halifax.

“I just thought we’d go down, get more pills and come home,” Angela says. “They kept us right there - 10 days in the hospital.”

Lyam has transverse myelitis - an infection that kills the nerve endings on the spine. The IWK sees a case every four years or so; Angela says Kentville staff last saw it in 1992.

“Where does something like this come from?” Dana says.

Lyam had two doses of a heavy-duty IV treatment: one made him sick - he couldn’t eat a piece of his birthday cake while in hospital Dec. 29. he’s had needles, a half-dozen CAT scans and MRIs, a spinal tap, he became dehydrated and he now knows the different diameters of the tubes he has to use for self-catheterization.

“I’m tired of the whole thing,” Lyam says. “Needles when I’m laying down, my breakfast would come at 6 a.m. and I couldn’t eat until after 10 after the bloodwork. It was really boring.”

He came home - still not able to walk. The family set up an upstairs bedroom, and Dana carried him out to the car so they could go to Somerset school. Lyam started half-days, sitting in a wheelchair, and Dana would come and pick him up for afternoon physio appointments.

“He was getting fitted for a leg brace, and I knew he wasn’t doing well - he was getting weaker,” Angela says. They checked with doctors mid-January: another eight-day Halifax hospital stay.

Lyam is now back home, half-days at school and learning to walk again. He’s determined to be using two canes by the end of March, but Angela and Dana say the cautious plan is by June.

Dana says it seems transverse myelitis could cause everything from coma, and then almost full recovery; or all kinds of side-effects on vision, muscle control, spasms and twitches.

“Lyam’s also hyper-sensitive to pain - just picking him up, I’ve just started to figure out how to carry him without hurting him.”

Lyam himself is working on his exercises: an elliptical trainer a few minutes at a time, throwing objects to work on his balance and practicing walking with the canes - which he thinks he could also use to hook over branches and climb trees.

“He’ll crawl over to Mum and Dad’s across the field,” Angela says. “We’ll go over after, but he’s determined.”

He’s been out coasting, Angela dragging him on a sled across the field and up and down the hills, but he’s missed the school skating trips and trying cross-country skiing this winter.

His classmates have been great, looking out for him and helping him get around school, and Angela says her own boss has helped with a walker and even blueberry juice to help Lyam’s digestive system get back on track. Co-workers pitched in on gas cards.

The family doesn’t have any kind of health insurance, and they’ve had to buy a second vehicle to get Lyam to and from school and appointments.

“It’s all adding up,” Dana days of the gas, the meals on the road, the city parking, the prescriptions and wheelchair and walker expenses.

Still, they’re optimistic Lyam is getting better.

“I’m of a mind, once he starts to improve, it will get better.”