Surgery can be the only answer for seizure disorder!

THE FINISH LINE is in sight.

With only a few metres to go in the cross-country run, Claire is tired, very tired.

Claire, trailing a field of 79 runners, is panting as she inches closer and closer to the line.

Parents, teachers and her fellow students are cheering and encouraging her as the then seven-year-old from Hebbville Academy hops and skips her way to the race’s end. She’s not hopping and skipping with joy, although her heart is bursting with pride at what she’s accomplishing. She’s hopping and skipping because, with lack of use of her left leg and arm, and with a brace on the left leg, that’s the only way she can run.

Claire’s last name is withheld because, as her father Greg says, "the story is key, not the name, since many names should come before us."

Now 11 and in Grade 5, with golden hair, a charming smile and conversational ease, Claire was diagnosed at age 5 with a very rare form of epilepsy called Rasmussen’s encephalitis. It usually strikes children under 10 and its effects are devastating. The only known cure is a hemispherectomy, the severing of one side of the brain from the other.

As a result of the surgery, Claire lost the use of her left arm and hand, wears a leg brace and has about half the vision in both eyes.

But, as you will read, Claire refuses to see herself as disabled and is game to try anything and everything.

Before her diagnosis, Claire was like any five-year-old — active, busy with gymnastics, skiing, skating, dancing and swimming.

"Kids with Rasmussen’s have an epilepsy that starts with a seizure or two, then spreads like wildfire to multiple seizures minutes apart, almost non-stop," says Greg, who works in health care. "Just before her surgery, Claire was having as many as 300 seizures a day."

Claire’s mother Kathy, an elementary school teacher, says she and Greg weren’t worried about the surgery to separate the brain and cancel the seizures as much as what the operation would leave her without.

"There were no options," she says.

Now, says Greg, they don’t talk about it at all. "It’s full steam ahead, whatever makes her happy."
"Does that mean I can have a horse?" Claire asks with a twinkle in her eye.

Kathy laughs. "No," she says, and recalls the many times in the last six years Claire has asked if she could do something other kids were doing, like ride a bike or a scooter.

Each time, Kathy has had to be cautious because, with Claire’s vision and mobility problems, she could trip over or bang into something or someone she doesn’t see quickly enough.

However, the leash has been released somewhat and Claire’s grit and determination are shining through as she swims competitively, skis downhill with the aid of an outrigger, skates, and impresses everyone who meets her.

She started swimming five years ago under Bridgewater Barracudas’ winter coach Karen Selig, a sports animator with the South Shore regional school board.

"It’s amazing what she does with one arm and one leg," says Karen. "She’s lighthearted, loves to smile and giggle, and perseveres. Last summer, she won two gold medals at the provincial outdoor meet against swimmers with disabilities. With her dedication, I can see her going much further in swimming."

Claire swims an hour a week in winter and every day in summer, doing all four strokes.
"I’m very competitive. I like to have fun, and win, too," she smiles.

Kathy says it’s hard for her to win with one arm and leg against able-bodied swimmers, but Greg looks at Claire and says: "If the others switched to one arm, they’d be way behind you."

After the surgery, Claire had to learn to walk again and Kathy worried about her safety. While not overly protective, they were cautious, but not Claire.

Greg recalls visiting a friend’s house with Claire, then about seven. The other man followed closely behind Claire to be sure she didn’t fall.

"Claire asked him what he was doing," Greg says. "When he said he was afraid she’d fall, Claire told him, ‘If I fall, I’ll just get back up again.’ "

Sherry Brine, a teacher at Hebbville Academy, was in charge of the cross-country race when Claire decided she should run.

"She wanted to do everything and we wouldn’t hold her back," says Sherry. "We walked the course to be sure she knew where any obstacles were."

Proudly, Sherry adds, "She’s so special. Anyone would be inspired by her."

Teacher, author and Claire’s neighbour, Nancy Wilcox Richards, was so inspired she wrote a children’s book, Claire’s Race, from which all proceeds will go to the Epilepsy Association of Nova Scotia.

"She is a very determined and courageous little girl," says Nancy. "I just wanted more people to know her story."

As Claire nears the finish line, with a hop and a skip she crosses it, her right arm pumping into the air with triumph.

"Look, Mom! I came in 79th. I ran the whole race!"

Read Great Kids in The Sunday Herald and Bright Spot in The Chronicle Herald Mondays, Wednesdays and Fridays. Contact Joel Jacobson via e-mail at jjacobson@herald.ca or fax at 426-1158, or phone 902-426-0128.