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Call the JDRF Monogenic Diabetes Hotline: 1-866-780-0096
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At four years old, Lauren Moore doesn't fully understand how drastically her future has just been altered. She never worried about her life expectancy, or getting married, or even going to school—but her parents did. Mom Melissa says Lauren exhibited classic symptoms of type 1 diabetes from birth—she drank a tremendous amount of milk and soaked her diapers, yet struggled to put on weight. Despite Melissa's suggestion to the doctor that Lauren might have type 1 diabetes, she was six months old and in diabetic ketoacidosis (DKA) before she was diagnosed.
The Moore's knew a little something about type 1 diabetes—Lauren's father, Brad, was diagnosed at age 30—but nothing could prepare them for the daily ordeal they went through with Lauren. She was what is often called a "brittle" diabetic—her parents would test her blood sugar 14 times a day, including every two hours at night, and weigh every morsel she put into her mouth—yet her blood sugars were constantly swinging wildly.
The Moores put Lauren on a pump from the time she was 20 months old, but her blood sugars were still difficult to control. Melissa says, "I've never tried so hard at anything in my life and still not been successful. It was absolutely horrible."
Then in October of 2006, Melissa's brother-in-law sent her an article that had appeared in the Chicago Tribune, which told the story of Lilly Jaffe. Lilly had also been diagnosed with type 1 diabetes as an infant, but turned out to have a form of monogenic diabetes instead.
"As soon as I read it I thought, this sounds so much like Lauren," Melissa remembers. "I prayed that this could be the answer for us."
She got Dr. Philipson's e-mail address and explained her daughter's situation. He sent her the genetic testing kit through the mail right away.
Lauren tested positive for the genetic mutation, so her parents made arrangements to fly to the University of Chicago hospital right away. The results were quick and dramatic. "They put her on the medication, and five days later we disconnected her pump for the last time," Melissa explains. "I don't remember ever crying that hard before in my life. Not only has this had a huge impact on our immediate family, but our extended family as well. Lauren is going to stay with her grandparents this summer for the first time."
Lauren still checks her blood sugar—only three times a day now, instead of 14. She takes sulfonylurea pills four times a day so her body can produce its own insulin. Her blood sugars are rarely over 130 anymore, and she has decided she wants to give her pump to another child who needs it.
The Moores are telling their story now because they want to find as many other kids like Lauren and Lilly as possible, and help them to be "normal" kids again. "There could be thousands out there," Melissa says.
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