Coping with type 1 diabetes
From the moment he awakes each morning at his family's home in West Kelowna, Rylan Sundstrom must follow a stringent routine.
The seven-year-old begins his day by pricking his finger to test his blood sugar level.
It's an exercise he or his parents will repeat at least another six times over the next 24 hours.
Rylan also needs four to six insulin injections per day, usually self-administered on his abdomen, but also on occasion on his arms or legs.
On top of it all, he must also follow a strict diet regimen, as his mom, Tiffany, carefully measures calories and carbohydrates for each meal, including two separate lunches for school.
Such is the life of a young type 1 diabetic whose day—and that of his family's—revolves around the maintenance and treatment of a disease which does not yet have a cure.
The Sundstroms have been living with Rylan's condition for more than a year after he was diagnosed with type 1 diabetes (T1D) last September when the family was living in Chilliwack.
In the summer of 2012, Rylan began suffering from fatigue, weight loss, insatiable thirst and frequent urination. By the fall his parents, Wes and Tiffany, had a hunch this was more serious than a virus or case of the flu.
"One morning he fainted at breakfast, not unconscious, but he just slouched over and that's when we took him to emergency," said Tiffany Sundstrom. "We were extremely scared. That's when they diagnosed him with type 1. The doctor explained his pancreas had stopped producing insulin, that this was serious and life-threatening. We were shattered."
Tiffany Sundstrom admits she knew next to nothing about T1D prior to Rylan's diagnosis.
One misconception she shared with many others was that the onset of the disease can be induced by a poor diet or unhealthy lifestyle. On the contrary, T1D is non-preventable.
"Before this happened to Rylan, I used to be judgmental and say, what are people doing ? Are they feeding sugar to their kids ? I'm so sorry for that," she said. "Because when it happens to you, you realize it's out of your control, there's nothing you could have done as a parent. We've always eaten super healthy, well-balanced food. It was hard to accept."
Still, with more than a year having passed since his diagnosis, the Sundstroms—with the help of others—have learned how to both live with and manage Rylan's T1D.
Good time management, patience and careful planning have all been beneficial in treating Rylan.
"We're past feeling sorry for ourselves and have learned a new normal," Tiffany explained.
"A lot of times we're up in the middle of the night with him to monitor his blood sugar. I get called to the school, sometimes twice a day. Anytime we want to go somewhere, we need to have a checklist and plan ahead. If you forget that one snack, it can be life-threatening. It's just part our lives now."
While Wes, Tiffany and Rylan's sister, Aly, all take an active role in the day-to-day treatment of his condition, there are others the Sundstrom family counts on for help.
The Sundstroms said the staff and students at Chief Tomat Elementary, where Rylan attends Grade 2, have been invaluable partners in caring for their son.
"Our school has been fabulous" she added. "We're basically putting his life their hands…he needs to be checked regularly. Keeping a normal kid safe is hard enough, but this is a whole other story. They've just been wonderful."
Unlike most kids his age, Rylan needs continuous supervision at events like field trips or birthday parties. That's why either Wes or Tiffany accompany Rylan to each and every one of his outings.
"A good example is when one of his friends invited him to a birthday party, and when other parents are dropping their seven-year-olds off, I have to stay there with Rylan," said Wes Sundstrom. "At parties, often the all the kids are running around, and he has to be monitored closely when he's physically active like that. So many things can affect his blood sugar, you have to be there."
As Rylan grows older, Wes and Tiffany Sundstrom say he will gradually gain more independence and will be able to live a relatively normal life, given his condition.
One person in Kelowna with T1D who can attest to a sustainable and happy existence is Doug Loepp.
Loepp, 43, was diagnosed with the disease 25 years ago and, while his daily routine revolves around blood sugar tests, insulin injections and painstaking diet planning, he continues to function normally at both work and life in general.
"I try to control it the best I can," Loepp said. "Everyday is a little different, you're eating different things, if you exercise or go for a hike, you have to adjust for that. It's a challenge sometimes, you always have to be aware of it, but it's doable. Everybody is different, but I've had it now for 25 years and haven't had any serious complications."
What Leopp, the Sundstroms and some 300,000 other Canadians ultimately hope to see is a cure for type 1 diabetes.
The JDRF (formerly Juvenile Diabetes Research Foundation) will soon be announcing human clinical trials in a cure therapy.
It's the beginning of moving research out of the lab, where diabetes has already been cured in mice over 130 times.
"There are amazing things happening in diabetes research right now and with research funding, we can move testing from the lab into human clinical trials," said Pam Prentice, manager of fundraising and development for JDRF. "Our other focus is on prevention and treatment, to keep people as healthy as we can, so that when a cure is discovered, those with type 1 diabetes will be able to take full advantage of it."
For Rylan Sundstrom and hundreds of other type 1 diabetics in the valley, research is the key to making the next breakthrough discovery that will potentially change their lives.
And raising funds for research is the primary focus of JDRF's upcoming eighth annual Starlight Gala. The Okanagan fundraiser (see sidebar) will be held Saturday, Oct. 26 at the Coast Capri Hotel.
JDRF hosts Starlight Gala
The Okanagan chapter of JDRF will host its 8th annual Starlight Gala fundraiser on Saturday, Oct. 26 at the Coast Capri Hotel.
The evening will feature a 1920s theme entitled 'Gatsby Glamour' and will celebrate the discovery of insulin by Dr. Frederick Banting and Dr. Charles Best in 1921.
The Starlight Gala includes a dinner, live and silent auctions, and an opportunity to learn how to dance the Charleston.
Since its inception, the annual Okanagan fundraiser has generated more than $1 million for diabetes research.
Tickets for the Starlight Gala are available by calling 250-765-7711.
Type 1 Diabetes facts:
• Type 1 diabetes (T1D) is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to derive energy from food.
• People with T1D run the risk of dangerous high or low blood sugar levels, both of which can be life-threatening.
• T1D is non-preventable.
• Insulin is not a cure for T1D, but a treatment
• T1D strikes both children and adults of any age. It comes on suddenly, causes dependence on injected or pumped insulin for life, and carries the constant threat of devastating complications.
• More than 300,000 Canadians live with type 1 diabetes
• The rate of T1D incidence among children under the age of 14 is estimated to increase by three per cent annually worldwide.
• The life expectancy for people with T1D may be shortened by as much as 15 years.
• JDRF is funding more than $6 million in research in B.C.