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."
The NIDES fundraiser included a talent show and silent auction, and they received a lot of support from local businesses for the auction. They also raised money with manicures and baking.
"Fundraising was amazing," said Cheryl. "NIDES is such a caring group of people. The kids are just lovely kids; they're all so welcoming, and they really made it a good fundraiser."
"It felt good," said Ashtyn. "It just makes a difference and makes me feel happy and makes the people who are receiving the money feel happy."
Ashtyn has been a NIDES student since she was 10 years old, as this type of schooling allows her rest periods, less introduction to sicknesses and a chance to learn at her own pace when she feels well.
Ashtyn was diagnosed with Crohn’s disease in 2008 when she was eight years old.
She loved to play basketball and loved school and being active, explained Cheryl.
She became very sick with fevers every day, weight loss, pain when eating or drinking and severe fatigue, diarrhea and other symptoms and was forced to leave public school and do homeschooling for a few years.
"She missed a lot of Grade 3 and most of Grade 4," said Cheryl. "I tried to teach at home, but I couldn't manage ... she was basically lying on the couch for 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.
While Brandon says he isn't in pain as much, Ashtyn gets pain in her stomach, and she doesn't have much energy.
Ashtyn reads Nancy Drew books to get away from it all, and she likes playing with her friends, who are very understanding when she is having a bad day.
Brandon likes riding his bike, playing video games and hanging out with his friends.
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 lives."
writer@comoxvalleyrecord.com