Cystic fibrosis patient looks to curling for cure

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Published on Monday, January 26, 2015

By Alan Gillies

G.E.M. Media

Carla Bullied’s 13-year-old son, Dallas Jonasson, has cystic fibrosis.

Cystic fibrosis (CF) is the most common fatal genetic disease affecting Canadian children and young adults. There is no cure. 

Cystic Fibrosis occurs when a child inherits two abnormal genes, one from each parent. Approximately one in twenty-five Canadians carry an abnormal version of the gene responsible for cystic fibrosis. Carriers do not have cystic fibrosis, nor do they exhibit any of the symptoms of the disease.

When two parents who are carriers have a child, there is a 25 percent chance that the child will be born with cystic fibrosis; there is also a 50 per cent chance that the child will be a carrier, and a 25 per cent chance that the child will neither be a carrier nor have cystic fibrosis.

“He was diagnosed at eight weeks,” Carla says of her son’s condition. “They knew there was something wrong right away. At 10 weeks, he developed pneumonia and he was rushed to Winnipeg, spent the entire summer.”

It is estimated that one in every 3,600 children born in Canada has cystic fibrosis. Almost 4,000 Canadian children, adolescents and adults with cystic fibrosis attend specialized CF clinics.

“He was doing better at Christmas, but he’s not well. There’s no cure… right now, we’re looking at either a lung transplant, or a rapid deterioration. They’ve offered to stop treatments, completely, although he assures us he’s going to fight, he’s going to get lung function back, and he’s not going to need any of it.”

While living and attending school in Carberry, Dallas was confined to a room at the Children’s Hospital at Winnipeg Health Sciences Centre for five months in 2014.

“He misses a lot of school; they have teachers in the hospital, but he can no longer attend classes in the hospital because he contracted VRE (Vancomycin-Resistantant Enterococci). So, he’s in isolation at all times, doesn’t get to use the play room, or move very much, which is very important for him. He’s also been diagnosed with arthritis due to the CF.”

Cystic fibrosis causes various effects on the body, but mainly affects the digestive system and lungs. The degree of cystic fibrosis involvement differs from person to person. However, the persistence and ongoing infection in the lungs, with destruction of lung tissues and loss of lung function, eventually causes death in the majority of people who have cystic fibrosis.

In addition to the mask he wears for oxygen and nebulized meds, several times each day Dallas wears a special vest that shakes him violently to reduce the mucus buildup in his lungs.

“He’s on oxygen now, pretty much full time, three nebulized medications, two inhalers, and eight different pills. He takes a prophylactic antibiotic; one to flush his liver; an antacid; he has to take pills to eat, extra vitamins to digest anything.”

Typical complications caused by cystic fibrosis are difficulty in digesting fats and proteins; vitamin deficiencies due to loss of pancreatic enzymes; and progressive loss of lung function.

While Carla can’t adequately express her gratitude for the help and assistance Dallas has received from medical personnel in Winnipeg and throughout Manitoba, she has also experienced more apathy and ignorance than she had expected.

Of the $88,000 worth of medication that Dallas requires each year, Pharmacare and benefits pay for all but his Hypertonic Saline; despite that, Carla explains that “The financial burden is unreal.

“Medical treatment in Carberry isn’t really an option. Dallas had a cold and needed antibiotics. I told the doctor that his cough wasn’t getting better, and the doctor said, ‘Asthmatics are like that’. I kept telling him that Dallas didn’t have asthma; he has Cystic Fibrosis. Four times he said, ‘Asthmatics are like that’. That was the only time we took him to a doctor here.

“Every trip into Winnipeg is $100 to $200 on fuel. You have parking at $25 a day at the hospital. Meals.

“There’s underground parking at $25/day. There’s one other parkade, that’s if your vehicle fits. My husband’s a truck driver. We have a large vehicle that only fits on the street.”

Which has led to the family’s conflict with the City of Winnipeg and Tartan Towing. While there is parking on the city street outside the Children’s Hospital, it’s illegal as of 3:30 pm.

“That’s rush hour, and then you’ll get towed. There’s no parking for emergency situations, no leeway at all. Families are having the worst day of their lives, and they come out, and their vehicle is not there.”

Dallas and his family were able to attend the event, the Safeway Championship, as guests of Curl Manitoba.

“He’s a huge Jeff Stoughton fan, and Jeff is a big Dallas fan. They put us up in their special viewing lounge, and Jeff sent a jersey to him before the finals, and as soon as they won, they were off the ice, and Jeff and Jon Mead were high-fiving him.”

Despite his condition, Dallas loves curling so much that he’s the skip of his Carberry Junior Curling rink.

For that reason, Dallas’ step-sister, Brianne Bullied, is hoping to plan an annual fundraising bonspiel in support of her step-brother and CF, which used to be a recipient of funds raised by Brandon University’s annual Shinerama social.

“She wanted to do something in Brandon for him, because she goes to BU, and they no longer do it. She figured what better way than a bonspiel? We’re looking at a date in March.”

The biggest hurdle now is finding sponsors, with hopes that a curling club in Brandon or elsewhere in Westman (possibly Carberry, Neepawa, Minnedosa, or Portage La Prairie) might be willing to forego the expense of ice fees.

However, due in part to the prohibitive costs, scheduling difficulties, and Dallas’ failing health, the possibility of the bonspiel taking place this season is in jeopardy.

Meanwhile, Dallas continues to struggle with his illness, but refuses to give up.

According to his mom, “We asked Dallas, when they offered to stop treatments: ‘How bad is it?’ and he said, ‘I don’t know what you all are making such a big deal about, it’s not that bad’.

“I asked ‘Is it worse than it used to be?’ And he started crying and said, ‘Well, I don’t know.’ I said, ‘It doesn’t matter. We’re behind you, if you want to fight’.

“He told us anything less would be killing himself, and he won’t do that. He’s the strongest kid I’ve ever met.”

For more information, see the Facebook page dedicated to both Dallas’ struggle with CF and his love for curling: Draw to the Cure for Cystic Fibrosis.