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Alex Riley was only 6 years old when his family became worried about his health.

They had just moved to Alamo from Southern California and were driving back to L.A. for Christmas when Alex wanted to stop every five minutes to use a restroom. Plus the young boy had a tremendous thirst.

"My mom called the doctor, and I was diagnosed on Christmas Eve," recalled Alex, 14, now a freshman at Monte Vista High.

The diagnosis was type 1 diabetes, also called juvenile diabetes, which means the pancreas has stopped producing insulin. It can occur at any age, but is most often diagnosed from infancy to the late 30s.

The Riley family has learned a lot since then about the disease, including that thirst and frequent urination are often the first symptoms.

"Alex's pancreas can't convert glucose into energy," explained his mother Nancy.

The intervening years have seen the Riley family - which also includes dad Rick and sister Rachel, a student at San Ramon Valley High - searching for ways to keep Alex's blood sugar at a healthy level. Hypoglycemic (low blood sugar) and hyperglycemic (high blood sugar) reactions are both potentially life-threatening.

Alex pricks his finger at least six times a day for blood to test his blood sugar level. On a day with heavy activity, he might do eight to 10 tests. Eating raises his blood sugar while exercise lowers it.

"Every correction requires a shot," Alex explained.

He was requiring four or more shots a day but for the last few years, he's worn a continuous infusion insulin pump. He leads a normal life in many ways; he was on Mustang Soccer's Division 1 U15 Silver team for the past six years and played mid and forward positions on the Monte Vista freshman soccer team.

"My insulin pump gives me a lot of freedom," he said.

But he must be vigilant, and must calculate the carbohydrates of everything he ingests, said his mother. Plus it can take his body up to 12 hours to process physical activity.

"He never gets a break," Nancy said. "Every day is different."

At the beginning of each school year they meet with Alex's teachers to talk about the disease, symptoms that might show up in class, and what Alex must do to keep his diabetes under control.

"I keep three-four Gatorades in every class," he said. "Sometimes I have to eat a snack."

On soccer days, he's especially vigilant about his food intake to keep his blood sugars in a safe range so he won't have to leave the field and let his teammates down.

"Living with diabetes is tough but you can live with it," Alex said. "You can do anything you want to do."

Alex is one of four youths from the Bay Area and 150 from throughout the country, ages 4 to 17, picked to go to Washington, D.C., from June 22-24 to ask Congress to support an increase in federal funding for research on diabetes.

"We are going to put a face on the disease," said Alex.

About 1,500 young people applied to be part of the Juvenile Diabetes Research Foundation's Children's Congress 2009.

"I wrote a paper about my life with diabetes and sent it in," recalled Alex. "I'm excited to have been chosen and look forward to sharing my story."

Mary Tyler Moore, who has had type 1 diabetes for almost 40 years, is the international chairwoman for the Juvenile Diabetes Research Foundation and she will lead the young delegates under the theme of "Promise to Remember Me."

Nancy Riley noted that locally Coins for a Cause, started by school nurse Sharon Dodson at Rancho Romero Elementary, collects spare change in the classrooms throughout the San Ramon Valley Unified School District in late September to benefit the Juvenile Diabetes Research Foundation. The program is entirely volunteer-driven, and this year raised $16,000 and in previous years collected as much as $20,000. Some proceeds go toward the endocrinology department at Children's Hospital Oakland, where it helps to fund the newly diagnosed family programs.

The other common type of diabetes, type 2, usually develops after age 40, although it has recently begun to appear with more frequency in children, according to www.jdrf.org.

"In this form of diabetes the pancreas still produces insulin, but the body does not produce enough or is not able to use it effectively. Treatment includes diet control, exercise, self-monitoring of blood glucose and, in some cases, oral drugs or insulin," said the Web site. The long-term complications of diabetes can include blindness, heart attack, kidney failure, stroke, nerve damage and amputations.

Hopefully, research will find a cure for diabetes or some way to prevent these devastating complications. Alex is doing his part by going to remind Congress of the critical need to find a cure, and by demonstrating that diabetes does not have to stop a young person from reaching his goals.

Become an advocate
Go to cc.jdrf.org to see profiles of all 150 delegates to the Children's Congress 2009, and find out how to become an advocate and how to donate.

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