Moving out

Danette Dooley
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For Brad Tuttle, there's nothing special about living - on his own - with cystic fibrosis

For 24-year-old Brad Tuttle, living with cystic fibrosis (CF) is simply just living.

"When you're diagnosed at age three months and you live with it from the beginning, it's the norm for you because you don't know any difference," Brad says during an interview at his St. John's apartment.

The Tuttle family is from Shearstown.

Brad's mother, Glenys Tuttle, says when you raise a sick child it's difficult to let them go out on their own.

Brad (left), George and Glenys Tuttle. Glenys is still a little worried about her son living on his own, and now and then writes reminder notes to leave on his fridge. Photo by Danette Dooley/Special to The Telegram

For 24-year-old Brad Tuttle, living with cystic fibrosis (CF) is simply just living.

"When you're diagnosed at age three months and you live with it from the beginning, it's the norm for you because you don't know any difference," Brad says during an interview at his St. John's apartment.

The Tuttle family is from Shearstown.

Brad's mother, Glenys Tuttle, says when you raise a sick child it's difficult to let them go out on their own.

For the past two years, Brad has been living in St. John's, taking a computer support specialist course at the College of the North Atlantic.

"And on Monday I'm starting a work term at The Rooms. That will be done in August and then I'll actually get my diploma. And hopefully, I'll be kept on or I'll find another job and continue on living and working in St. John's."

Many of Brad's friends moved to St. John's after completing high school. At his mother's insistence, Brad continued to live at home and completed a two-year computer course at Keyin Tech in Carbonear.

Worry

"Mom just didn't want him to go to St. John's. I was so worried about how he'd get on in here by himself. He takes about 40-45 pills a day," Glenys says.

While worried whether her son could look after himself during the early months of his move to St. John's, Glenys and her husband George soon realized he had things under control.

"He's been doing marvellous on his own. And we realize now that he could have done it out of high school. But I just wasn't ready to let him go."

Cystic fibrosis affects the lungs and the digestive system, where it blocks the absorption of nutrients from food. In the lungs, the effects of the disease are most devastating, and with time respiratory problems become increasingly severe.

Persons with CF must follow a demanding daily routine of physical therapy and large amounts of drugs to keep the lungs free of congestion and infection and to help them absorb adequate nutrition from their food.

Brad says he has no trouble doing his therapy or taking his pills. The only drawback, he says, is that because the therapy is a must in the morning and at night, he has to get up much earlier than others to get ready for school or work.

Glenys says when her son was diagnosed with CF as an infant, she never thought he'd live to venture out on his own.

"I didn't know anything about it at the time. They say it's hereditary but we never knew it was in our family. We have three other children and they're fine."

Her first question to the doctor was whether the disease could be cured, Glenys says.

"When they said, 'No,' I was devastated. It was a very scary and hard time. All I could think about was that something was going to happen to him and he was going to die. There was one woman there who told me that she had three children with CF, and that the three of them had passed away."

More adults

May is Cystic Fibrosis Month.

Betty Sheppard is president of the Eastern Newfoundland and Labrador chapter of the Canadian Cystic Fibrosis Foundation (CCFF).

There are currently 75 people in this province living with CF, Sheppard says.

"Over half of them (42 individuals) are over the age of 18, so we have more now in our adult clinic than our pediatric clinic whereas, 10 years ago, only about 25 to 30 per cent were over the age of 18."

People are not only living longer, their quality of life has also improved greatly, Sheppard says.

"There's so much research that has gone on to bring new drugs that loosen up mucus and make it easier to come up."

New antibiotics to help fight infection have also been developed over the last five years, she says.

Better education also means people with CF are taking better care of themselves, Sheppard says.

"The other thing is a (lung) transplant. We have six kids with transplants right now in this province," Sheppard says.

While Brad's lungs remain in good condition, if the CF worsens over the years, there's always the possibility of a lung transplant, he says.

His mother also remains optimistic about his future.

"Great strides are being made and that gives you hope. If you don't have hope, you don't have anything," Glenys says.

(For information on CCFF annual Great Strides Walks, which happens in various parts of the province May 31, visit www.cysticfibrosis.ca)

danette@nl.rogers.com

Organizations: College of the North Atlantic, The Rooms, Canadian Cystic Fibrosis Foundation Keyin Tech

Geographic location: St. John's, Carbonear, Eastern Newfoundland and Labrador

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Recent comments

  • Violet
    July 02, 2010 - 13:12

    After reading this article, I am thankful that I was fortunate enough to have healthy children. Bradley should be commended for taking responsibility of himself and trying to make a future independently; I know personally that he is the product of his wonderful parents!

  • Glenys
    July 02, 2010 - 13:11

    Thank you for writing this article...it is well done.

  • Violet
    July 01, 2010 - 19:50

    After reading this article, I am thankful that I was fortunate enough to have healthy children. Bradley should be commended for taking responsibility of himself and trying to make a future independently; I know personally that he is the product of his wonderful parents!

  • Glenys
    July 01, 2010 - 19:47

    Thank you for writing this article...it is well done.