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Taking each day at a time

Carla White (in float) and her homecare worker, Brenda Morgan, cool off in the water.
Carla White (in float) and her homecare worker, Brenda Morgan, cool off in the water. - Contributed

Determined Newfoundland woman with rare hereditary disease lives life to the fullest

Carla White of Conception Bay South, NL has several inspirational quotes on the walls in her apartment. 

‘Cherish the past, live for today, dream for tomorrow,’ one piece of wall art states.

They're words she lives by.

In looking back on her past, the 48-year-old recalls how she started bumping into things and became withdrawn at age 16. Her handwriting was also affected by whatever was causing her other symptoms, she said.

Carla was diagnosed with Wilson’s disease – a hereditary condition that causes excessive amounts of copper in the body. While small amounts are needed for good health, too much copper has toxic effects on several organs, including the liver, brain, and eyes. 

Wilson’s disease has affected a part of Carla’s brain and causes physical symptoms such as slurred speech, tremors, and problems with balance.
It does not affect her intellectual abilities and, although her speech may be difficult to understand, Carla expresses herself articulately when answering questions by e-mail and other forms of online communication.


Pure determination 

After her diagnosis, Carla spent about 18 months in the Dr. Leonard A. Miller (Rehabilitation) Centre in St. John’s and several months at Toronto’s Sick Kids Hospital. 

“There was a time, when she was in Toronto, that her only physical movement was that she could blink her eyes,” her father recalled during a recent interview at the family home, where Carla lives in her own apartment.

Wayne recalled trying to come up with a way to help his daughter communicate while in the hospital in Toronto.

“I printed the letters of the alphabet and the numbers from one to ten on a brown paper bag. I would ask Carla questions and, if she could, she would try to spell out a word ... a lot of the initial questions were yes or no ... that eventually led to a bliss (communication) board,” Wayne said.

Once computers became everyday communication tools, Carla started to use them “and she hasn’t stopped since,” her father said.

The close relationship between Carla and her father is obvious during the interview. 

Some of the stories Wayne tells about when he and his wife Patricia were seeking help for a teenage Carla are heartbreaking. Other yarns bring laughter from both Carla and her father.

“Carla is as good as gold. She’s very social and she’s a great fundraiser,” Wayne said.

She is also great at word puzzles, he said.
“Carla is well-read. Some of the words she finds, most people would not know,” he said.

Carla White tries her hand at rock painting. Contributed
Carla White tries her hand at rock painting. Contributed


 

Living life to the fullest

Over the years, medication and Botox injections have improved Carla’s symptoms.

She also adheres to a restricted diet and avoids certain foods, such as mushrooms, nuts, shellfish, and chocolate.

Carla has come a long way since her diagnosis. In the early 1990s, she attended Holy Heart of Mary High School in St. John’s and earned her high school diploma.

“Carla is a very smart individual. When she was at Holy Heart, she was recognized for her outstanding achievement. She was in a wheelchair then,” her father recalled.

She also completed a business administration course from a local college. Although her disability doesn’t allow her to work, with support from her family and friends, she lives life to the fullest and accepts what she cannot change.

“I can’t use my hands and I’m disabled, and sometimes people treat me differently. Sometimes, people stare and sometimes, I can’t be understood, but I’m taking it one day at a time,” she said via e-mail.

Over the years, Carla participated in swimming in Mount Pearl (with Gary Byrne) and boccia ball at Easter Seals House.

A board member of the Newfoundland and Labrador Brain Injury Association, she looks forward to the association’s activities, including going bowling with the group.

“The brain injury association has added to my life ... I’ve made close friends who are like an extended family,” she said.

Carla’s speech has improved over the years. Her biggest challenge these days, she said, is not being able to use her hands. However, that doesn’t stop her from socializing and doing the things she loves to do.

Her homecare worker, Brenda Morgan, is like a big sister to her, she said, and they are great friends. 

“I knew my worker for 19 years before she started working with me. She is with me eight hours a day. We go to movies, concerts, shopping, get our hair done.”
Carla also has two siblings and a nephew.

Her outlook on life is to treasure each day and never take life for granted. The determined woman sees her glass as half-full rather than half-empty.

“Another day on this side of the sod is good. Things could be worse ... if it was not for the hugs and prayers of my family and friends, and for my willpower, I would not be where I am today,” she said.


danette@nl.rogers.com

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