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September 30, 2009 > Walking for a cure

Walking for a cure

A local family's quest to raise money for juvenile diabetic research

By Alyson Whitaker

The crying in the backseat was getting louder. "I'm thirsty," screamed then 4-year old Amy Turnlund. Frustrated and unable to pull over, her mom Christy said, "Drink your lemonade!"

"I already did . . . it's gone!" was the frantic reply. A week later, while at the pediatrician for an unrelated concern, Christy brought up the extreme thirst. The doctor suggested testing Amy's blood glucose levels. The test came back with devastating news . . . Amy had Type 1 Diabetes.

Immediately following her diagnosis, the Turnlunds were thrust into an unfamiliar world - one filled with needles, glucose meters, extreme portion control, and food awareness. It marked the end of the spontaneous lifestyle to which they were accustomed.

Type 1 Diabetes (also called Juvenile Diabetes) is an autoimmune disease. An autoimmune disease results when the body's system for fighting infection - the immune system - turns against a part of the body. In diabetes, the immune system attacks and destroys the insulin-producing beta cells in the pancreas. The pancreas then produces little or no insulin. This type of diabetes usually strikes children and young adults, although onset can occur at any age. It differs greatly from Type 2 Diabetes (typically seen in adults), in which the pancreas continues producing insulin, but the body is resistant to it. A Type 1 diabetic is insulin dependent for life. Type 2 Diabetes can be treated by lifestyle modifications, oral medication, and in extreme cases, insulin. Type 1 typically runs in families, and is not caused by obesity or lifestyle and food choices. It is estimated that 15,000 youths in the United States are diagnosed with Type 1 Diabetes annually.

Almost immediately after treatment began, Amy returned to her happy, laughing self. In addition to the extreme thirst, Amy had been irritable and more lethargic than usual in the weeks leading up to her diagnosis. But it was also summertime, and they were a busy and active young family. They assumed that her behavior was due to being overly worn out from summer activities. Looking back, Mark and Christy were able to recognize some of the other symptoms that indicated something was amiss.

For the first year after her diagnosis, Amy's treatment consisted of twice-daily insulin shots. Meals and snacks were tightly controlled, and no deviations were allowed. During the second year, treatment was altered to include an insulin shot each time Amy ate, meaning she was being injected six to seven times a day, in addition to the eight to ten daily finger "pokeys" to test her blood sugar levels.

In the third year, the Turnlunds opted to switch to an insulin pump. The pump connects directly to a catheter site inserted in Amy's abdomen or back, pumping insulin into her system at a steady level every hour. Her blood glucose levels are more stable, and the dips and highs are more infrequent. The downside is that the pump site must be changed every three to four days. The changing of the pump site is still just as dreaded and uncomfortable as it was in the beginning.

Amy is now nine years old and in the fourth grade in Fremont. She is learning to live with the disease and has acquired grown up skills and knowledge way beyond her years. She knows how to read food labels to check for carbohydrate content. She can test her own blood sugar, is learning how to program her insulin pump, and knows not to eat without asking. She recognizes the feeling of low blood sugar, and can ask her parents or teachers for help. She can explain the basics of the disease to friends, and is taking more responsibility for the everyday management of her diabetes. She participates in normal childhood activities like dance, gymnastics, t-ball, and has just finished her third year on a summer league swim team.

Proper management of the disease is essential to ensure that long-term complications are minimized. Diabetics are at risk for circulatory and eyesight problems, and other diabetic-related health issues. The auto-immune disorder can cause complications from otherwise normal childhood viruses and illnesses, making recovery a longer process.

Just four months after her diagnosis, the Turnlunds participated in their first JDRF (Juvenile Diabetes Research Foundation) Walk for a Cure. JDRF is leading the research to find a cure for Type 1 Diabetes, the disease that affects an estimated one million people in the United States. The foundation is also a great resource for families learning to live with diabetes. Through a mentoring program, the Turnlunds met other families going through the same experience, and received support and advice on dealing with the disease. They are now on the list of mentors, providing that same support to newly diagnosed diabetics and their families.

There are five JDRF Walks in the greater Bay Area in the month of October. These events raise nearly $2.5 million a year. The walk is a way to contribute to the research to find a cure, as well as meet and interact with other families. For Amy, the walk is the one day a year that it is actually fun to have diabetes. She walks with the team known as "Amy's Angels," made up of over 50 friends and family members joining together to raise money for diabetic research. Over the past five years, the team has contributed nearly $100,000 to JDRF.

While Amy is beginning to come to terms with the fact that this is a lifelong battle, at times she still pauses and asks, "When can we stop walking?"

The answer is simple -"When a cure is found." Until then, each October, you'll find the Turnlunds walking with hundreds of other diabetics and their families, holding out hope for the day that a cure will be found and Amy can have the promise of a long, healthy life.

For information on the JDRF research and Walk for A Cure locations in the Bay Area, go to www.curetype1.org/walk.

If you'd like to contribute to Amy's Angels team, you may donate online at http://walk.jdrf.org/walker.cfm?id=87430627

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