Making the most of it

Danette Dooley
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No value in copper surplus for Wilson's disease patient

Carla White has slurred speech that's difficult to understand. She's also an accomplished speed reader, and can read almost as well when the page is turned upside down as when it's right side up.

Like most people, she has frailties and strengths, abilities and disabilities. She's a perfect example of why you should never be too quick to make assumptions about people and their abilities.

Carla White and a friend, Randy White, get their pizzas ready for the oven. - Photo by Danette Dooley/Special to The Telegram

Carla White has slurred speech that's difficult to understand. She's also an accomplished speed reader, and can read almost as well when the page is turned upside down as when it's right side up.

Like most people, she has frailties and strengths, abilities and disabilities. She's a perfect example of why you should never be too quick to make assumptions about people and their abilities.

On Wednesday, White - who's 37 - was sitting around a U-shaped table with other adults in the recreation room at Pearlgate Dominion in Mount Pearl for a lesson in pizza-making.

The supermarket offers the space for free to members of the Newfoundland and Labrador Brain Injury Association.

White doesn't have a brain injury, but an illness called Wilson's disease that has left her disabled.

She's a member of the brain injury association, though, and rarely misses an outing.

She tends to talk fast when she's excited, but when she's asked to repeat what she's saying, she slows down and, with determination, gets the words out.

"We go different places and we always have fun," she said. "And thanks to group, I have met many close friends."

White is from St. John's, but her family moved to Conception Bay South when she was four.

At age 16 she started bumping into things and became withdrawn.

Doctors thought she had a brain tumour, but that was quickly ruled out.

White's parents, Patricia and Wayne White, were told their daughter was just looking for attention.

"I ended up in the Health Sciences Centre where I was placed on the psychiatric unit because the doctors still felt I was causing my own symptoms ...," White says.

It was there that a psychiatrist made the diagnosis of Wilson's disease, a hereditary condition that causes excessive amounts of copper in the body.

While small amounts are needed for good health, an overload has toxic effects on several organs, including the liver, brain and eyes.

If not diagnosed and properly treated, the disease can be fatal.

The high levels of copper in White's body can cause drooling, tremors, speech and balance problems.

"I can't use my hand and I can only type with one finger. I'm on pills four times a day," she says.

Still, she says her life is a lot better than doctors predicted it would be.

White spent 18 months as one of the youngest patients at the Miller Centre in St. John's, and about four months at Toronto's Sick Kids Hospital.

"I was in a wheelchair for a year-and-a-half. I couldn't talk. I couldn't feed myself. I could only communicate with (an alphabet) board. ..." she said.

"After I left the Miller Centre, they were going to put me in the Hoyles Home (a long-term care facility), but Mom said no."

White required operations on one arm and one foot.

"The surgery on my foot helped me walk again because my foot was turned in like a bird's claw," she explained.

White was unable to complete her high school education when she was sick, but in the early 1990s she attended Holy Heart of Mary High School and earned her diploma, as well as an award for business math and recognition of her outstanding achievement.

She also completed a business administration course at Cabot College, but her disability prevents her from working.

She still thinks of her life as "a blessing in disguise."

"I'm still here," she says, "thanks to Mom and Dad, and Pearl, too."

Pearl Benmore has been her home support worker for almost two decades.

White, who has two siblings, has her own apartment in her parents' house.

Benmore calls her an inspiration to everyone she meets.

"Carla's come a long, long way. She's like the daughter I never had," says Benmore, who tries to help White be as independent as possible.

"I does my own grocery shopping with Pearl," White says.

She also enjoys spending time on her computer and playing with her dog, Zoey, a terrier-cross.

"There's nothing wrong with my brain. It's in my hands and feet, that's all," she says.

Keri-Lynn McGrath, the executive director of the brain injury association, says White is a peer mentor and friend to members and volunteers in the organization.

"Carla is a dynamic presence," she said. "Her exuberant personality and positive outlook inspire us all."

Always the optimist, White offers this advice: "Concentrate on your abilities, not your disabilities. And remember, it could be worse."

danette@nl.rogers.com

Organizations: Cabot College, Newfoundland and Labrador Brain Injury Association, Miller Centre Health Sciences Centre Sick Kids Hospital Mary High School

Geographic location: St. John's, Mount Pearl, Toronto

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Recent comments

  • Helen
    July 02, 2010 - 13:34

    Hi, Carla: Keep up the great work; you are an inspiration. Enjoyed reading your story, and I'm sure a lot of able/disable people have benefited from it.

  • Charmaine
    July 02, 2010 - 13:24

    Carla is a wonderful person making the most of her life...it would be nice if we all had her enthusiasm and positivity!! Good for you Carla!

  • Bob
    July 02, 2010 - 13:23

    Hey Carla,you've come a long way.Good on ya !!! Could be worse .......your buddy Bob

  • Joanne
    July 02, 2010 - 13:16

    I find it amazing when some people who have anything wrong with them will always let it drag them down. Then on the other hand, we have people like Carla, who will do everything in their power to bring themselves above it. Carla is what I call a Special Person .

  • Helen
    July 02, 2010 - 13:14

    Hi, Carla: Keep up the great work; you are an inspiration. Enjoyed reading your story, and I'm sure a lot of able/disable people have benefited from it.

  • Helen
    July 01, 2010 - 20:23

    Hi, Carla: Keep up the great work; you are an inspiration. Enjoyed reading your story, and I'm sure a lot of able/disable people have benefited from it.

  • Charmaine
    July 01, 2010 - 20:10

    Carla is a wonderful person making the most of her life...it would be nice if we all had her enthusiasm and positivity!! Good for you Carla!

  • Bob
    July 01, 2010 - 20:08

    Hey Carla,you've come a long way.Good on ya !!! Could be worse .......your buddy Bob

  • Joanne
    July 01, 2010 - 19:56

    I find it amazing when some people who have anything wrong with them will always let it drag them down. Then on the other hand, we have people like Carla, who will do everything in their power to bring themselves above it. Carla is what I call a Special Person .

  • Helen
    July 01, 2010 - 19:52

    Hi, Carla: Keep up the great work; you are an inspiration. Enjoyed reading your story, and I'm sure a lot of able/disable people have benefited from it.