FRIDAY
September 23, 2011
A division of
Vol. 26 No. 76
Your community. Your newspaper.
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ANNIVERSARY
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Family bands together against Crohn’s Lindsay Chung Record Staff
Ashtyn and Brandon Lively spend so much time at BC Children’s Hospital in Vancouver that their family recently moved from Courtenay to Nanaimo to make their trips to the hospital easier. Ashtyn, 12, and Brandon, 15, both suffer from severe Crohn’s disease, a chronic disease that inflames the lining of the gastrointestinal tract and disrupts the body’s ability to digest food, absorb nutrition and eliminate waste in a healthy manner — resulting in abdominal pain, cramping, gas, bloating, fatigue, diarrhea, loss of appetite and other symptoms. The Livelys have to go for intravenous medication in Vancouver every six to eight weeks or four to six weeks depending on how their systems can handle it. Just this summer, they’ve made five trips to Vancouver for Brandon and two trips for Ashtyn. “As a mom with two kids, I can spend hours a day just in followup information, e-mails, phone calls,” said their mother, Cheryl. “I keep track of their bloodwork. They have special meals. “I don’t work. I can’t work. This is my job. I can’t really get away. It seems the minute I get away, they get fevered. I try to surround the house with lots of kids and keep it as normal as possible.” Ashtyn recently raised almost $5,000 for the Medical Day Unit at Children’s Hospital where she and Brandon get their intravenous medication, and for the Crohn’s and Colitis Foundation of Canada (CCFC). This was done in part with North Island Distance Education School (NIDES), which held a silent auction and raised money for Ashtyn’s charity. Ashtyn raised almost $2,000 on her own by going door to door. “Just going door to door was amazing,” said Cheryl. “There was an outpouring of support in this area. It seemed every door we went to, there were hugs, and they knew someone with Crohn’s. It was also a lot of educating people.”
ASHTYN AND BRANDON LIVELY both suffer from severe Crohn’s disease, but they don’t let that get them down. PHOTO BY LINDSAY CHUNG
The NIDES fundraiser included tion to sicknesses and a chance to a talent show and silent auction, learn at her own pace when she and they received a lot of support feels well. from local businesses for the aucAshtyn was diagnosed with tion. They also raised money with Crohn’s disease in 2008 when she manicures and baking. was eight years old. “FundShe loved raising was to play Just going door to door a m a z i n g ,” basketball said Cheryl. was amazing. There was an out- and loved “NIDES is pouring of support in this area. school and such a carbeing active, ing group of It seemed every door we went to, e x p l a i n e d people. The there were hugs, and they knew Cheryl. kids are just someone with Crohn’s. S h e lovely kids; became very Cheryl Lively sick with they’re all so welcomfevers every ing, and they really made it a day, weight loss, pain when eating good fundraiser.” or drinking and severe fatigue, “It felt good,” said Ashtyn. diarrhea and other symptoms “It just makes a difference and and was forced to leave public makes me feel happy and makes school and do homeschooling for the people who are receiving the a few years. money feel happy.” “She missed a lot of Grade Ashtyn has been a NIDES stu- 3 and most of Grade 4,” said dent since she was 10 years old, Cheryl. “I tried to teach at home, as this type of schooling allows but I couldn’t manage ... she was her rest periods, less introduc- basically lying on the couch for
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weeks at a time. She went from a healthy young girl to basically bed-ridden.” In December 2010, Ashtyn had surgery to remove nine centimetres of intestine because the Crohn’s had caused an intestinal blockage. Brandon was diagnosed with severe Crohn’s disease in 2010. He was on the basketball team at Mark R. Isfeld Secondary School, but he doesn’t have much energy now. “Isfeld was very good,” said Cheryl. “He wasn’t able to do gym last term, so they have a room where he could rest and work on school work at his own pace because he just didn’t have the energy to come home and work on it after school.” Brandon had to take a lot of pills at first, but his Crohn’s is now considered severe, so, like Ashtyn, he is on intravenous medication. Crohn’s disease has had a big impact on what Ashtyn can and can’t eat, and she often has to go on a liquid diet. “I could eat basically anything, but now I have to be careful,” she said. “It’s really hard because I sometimes have to live with pain.” Any cold or flu that Ashtyn or Brandon are exposed to can result in another flare up, which could land them back in the hospital or in bed for weeks. “The hardest thing for her and her brother is that they cannot do the things that most children take for granted, but they never let it get them down,” said Cheryl. The Livelys remain very positive despite the challenges they face. “We try to be as upbeat as possible as a family and take it one day at a time,” said Cheryl. “This is what’s been dealt to us as a family, and you have to accept it. “We’re a very strong family unit, and they know they have us to lean on for support, and they’re never alone. It’s not all doom and gloom, this disease. There are many people who suffer from Crohn’s who lead totally normal writer@comoxvalleyrecord.com lives.”
RUGBY ON WHEELS
Wheelchair rugby comes to the Comox Valley. ■ B10
SHE LOVES CLAY
The first time Cori Sandler touched clay, it felt better than anything she’d ever experienced. For five days all she did was eat, sleep and immerse her hands in the warm wet substance. That was 25 years ago. Now a professional potter, Sandler’s work is exhibited in Toronto and various galleries on the West Coast. Last year she moved to the Comox Valley; this month she became president of the the Comox Valley Potters Club.
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