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Youth ambassadors on front lines
By Janice Youngwith
It's all her teddy bear's fault.
That's what 10-year-old Taryn Wilcox thought upon learning of her type 1 diabetes diagnosis at age 5. Along with that 2004 diagnosis, came a host of special concerns and worries for parents Charis and Paul Wilcox of Gurnee.
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| American Diabetes Association Youth Ambassadors Katie Ervin and Taryn Wilcox. |
Children and diabetes
According to the American Diabetes Association, each year nearly 15,000 youngsters are diagnosed with type 1 diabetes, a disease that occurs when the pancreas can no longer make insulin. Nearly 186,300 young people, age 18 and younger in the United States have diabetes - the majority with type 1. Onset often occurs in childhood and early adolescence.
Insulin is the hormone that acts as a key to open cell doors for glucose to enter, providing cells with energy to function correctly. Without glucose, cells starve for energy.
For more information on the American Diabetes Association, research, advocacy and fundraising opportunities, call (888) DIABETES (342-2383) or visit www.diabetes.org.
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"It was supposed to be a simple kindergarten physical," recalls Charis of the day five years ago when they learned of sugar in their daughter's urine. "That simple urinalysis led to a blood glucose test and a four-day hospital stay at Northwestern Memorial as doctors worked to stabilize Taryn's condition and we began learning all we could about diabetes."
Like many parents of children newly diagnosed with diabetes, the Wilcoxes say their greatest fears are serious, long-term complications, what insulin might mean for their daughter's body and worries about their child being labeled "different."
While those fears are always in the back of her mind, Charis says reality has been much different.
"Kindergarten and first grade went smoothly as we adjusted to both school and diabetes," she recalls. "But when Taryn's second-grade teacher started treating her differently and expressed concerns about the extra work diabetes required, we decided it was time for advocacy and a change."
A similar challenge arose on Taryn's swim team when her coach insisted she be able to swim sets without a juice break or monitoring. Until that point, the coach insisted practice time be restricted.
"That demand posed significant risk for Taryn due to her diabetes," Charis says. "Blood glucose levels fluctuate throughout the day and not necessarily according to schedule. Dangerous highs and lows can be life-threatening and something we need to keep a close eye on. Delayed testing and treatment is not an option."
When educational efforts failed, Taryn opted for a different swim team - the YMCA Stingrays at Hastings Lake - and now is posting record breast stroke times and practicing in a more accepting and supportive setting.
A fifth-grader at Woodland Intermediate School in Gurnee, Taryn is sharing her story as one of a select few American Diabetes Association youth ambassadors hoping to put a "face" to the lifelong struggle with diabetes.
"Diabetes is a part of who I am," Taryn says. She cites a positive attitude and diligence in monitoring her blood glucose levels as keys to her success. "Other than that, there is absolutely nothing different about me. I occasionally need an energy bar to keep going and go to the nurse's office three times each day for testing."
Taryn has been giving herself insulin injections since age 6 and just this summer at the ADA Triangle D overnight camp for children with diabetes learned to alter the injection site from her abdomen to arms and legs.
"She's been counting carbohydrates for years and just this fall met with a newly diagnosed classmate to demonstrate injection techniques and share tips," Charis says.
Katie's story
Close friend Katie Ervin, 11, of south suburban New Lenox, also serves as an ADA youth ambassador.
Hypoglycemia symptoms
Hypoglycemia can occur for a number of reasons including: delaying or skipping a meal, eating too little food at a meal, getting more exercise than usual, taking too much diabetes medicine, especially insulin, sulfonylureas, or meglitinides and alcohol consumption. Each person reacts to hypoglycemia differently. It's important to observe what symptoms are unique to you. That way, you can recognize it sooner, and treat it before it becomes serious.
• Shakiness
• Nervousness
• Sweating
• Irritability, sadness, or anger
• Impatience
• Chills and cold sweats
• Fast heartbeat
• Light-headedness or dizziness
• Drowsiness
• Hunger
• Stubbornness or combativeness
• Lack of coordination
• Blurred vision
• Nausea
• Tingling or numbness of lips or tongue
• Nightmares or crying out during sleep
• Headaches
• Strange behavior
• Confusion
• Personality change
• Passing out
- Source: American Diabetes Association
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"I know my diagnosis three years ago was a big deal and rather scary, but it's been interesting as well," Katie says. She loves the opportunity to share her story and do great things in terms of raising awareness.
Katie's mom, Liz, says in hindsight, some of the clues to Katie's diagnosis were there but went unrecognized.
"Katie had been very thirsty and was drinking lots of water, especially at night," Liz says. "She looked skinny and had dark circles under her eyes. Unbeknown to us, these outward signs are classic symptoms of diabetes."
A required school physical helped doctors pinpoint the cause. Katie had diabetes.
"As a family we became proactive in understanding and managing the disease, as well as promoting awareness," Ervin recalls. "Katie's sisters, Abby, 10, and Lauren, 8, are tested annually through the Type 1 Diabetes TrialNet program, an international network of researchers from 18 clinical centers in the United States, Canada, Finland, United Kingdom, Italy, Germany, Australia and New Zealand who are exploring ways to prevent, delay and reverse the progression of type 1 diabetes."
Katie shared her diagnosis with classmates, participated in the annual American Diabetes Association's Step Out: Walk to Fight Diabetes, and helped bring the ADA's School Walk for Diabetes program to her school district, which encompasses four schools. In the past two years, students at these schools have helped raise $25,000.
She also began designing holiday jewelry for the American Diabetes Association's Gift of Hope Christmas catalog, designating net proceeds from their sale of her inspirational circle necklace to benefit ADA diabetes research.
Katie designed a sterling silver pendant engraved with five inspirational words: hope, faith, strength, ambition, research and perseverance and a rubber "0" ring like the one used in her insulin pump. The words symbolize daily life with diabetes and the fight to find a cure.
Both the necklace and Katie will be featured on the front cover of the American Diabetes Association's Gift of Hope holiday catalog along with an article about Katie's efforts as a young crusader.
Putting a face to the battle
Both Katie and Taryn say sharing their story is a labor of love, a true passion and the opportunity of a lifetime.
"We recently spoke with Chicago Bear's Coach Lovie Smith and his wife, Maryann, at a recent ADA Care To Cure event at Soldier Field's Cadillac Club," Taryn says. "My mom is a Bears fan, but I enjoyed talking with the Smiths and sharing my story at the fundraising event."
The girls also assisted in ADA advocacy efforts as they had the opportunity to speak with legislators in Springfield as they discussed pending Safe At School legislation.
This fall Taryn has been invited to serve as a page for a day by Senator Michael Bond representing District 31 in Lake County.
In addition, the girls also were interviewed for the WGN-TV Diabetes Circle of Care program and spoke at the ADA Step Out: Walk to Fight Diabetes in Buffalo Grove, Soldier Field in Chicago and Bengston's Pumpkin Farm in Homer Glen.
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