Our 8-year-old daughter was diagnosed with Type 1 diabetes shortly after her 5th birthday. Type 1 diabetes does not run in our families, so the diagnosis was a complete surprise to us. While an estimated 16 million Americans suffer from diabetes, only 10 percent of them have the most severe form of the disease -- Type 1 diabetes. It often is called juvenile or insulin-dependent diabetes. Our daughter will not outgrow diabetes. Her pancreas flat-out quit producing insulin. She relies on insulin each and every day to stay alive. Without insulin, she would die within a matter of days. There is no cure ... yet.
Type 1 diabetes is a relentless disease. You never get a break from it -- not for a day or even an hour. It is always there. Our daughter must check her blood several times a day. She must give herself insulin, via a pump always attached to her, every time she eats or drinks anything. We have been fortunate to have a good health care plans and access to one of the best pediatric diabetes care facilities in the country at Stanford University.
Several months after our daughter's diagnosis, I started a support group for parents of Type 1 diabetics. The group is based in San Francisco's East Bay. I often hear from parents who are struggling with their child's school for the most basic rights guaranteed under law, such as the right to check blood in the classroom or keep their insulin with them at all times. Some schools resist having the child's glucagon shot in the classroom, despite the fact that this shot could save a child's life if her blood sugar drops so low that she passes out.
We are fortunate that medical technology has given us many tools with which to effectively manage our children's diabetes. However, diabetes remains an intensely complex disease to manage. I worry about the families who do not have the resources, support or even the know-how to manage this difficult disease. Many families do not have insurance. These are the diabetic children who end up in the emergency room time after time and whose lives are tragically cut short due to complications of their disease.
Diabetes has changed our family forever. Our daughter will never lead a completely carefree life that most children enjoy. Our priority is to keep our daughter as happy and healthy as medical technology allows. Our goal is to find a cure for this horrible disease.
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