Your Rights, One Voice: Jennifer and Allie’s Story

Allie, left, with her brother at Tour de Cure.

It was surreal. Unimaginable. I still remember my daughter Allie’s type 1 diabetes diagnosis like it was yesterday.

My name is Jennifer Holdgreve, and that day in May 2011 changed my life forever.

Allie was only 6 years old, and she exhibited all the signs of diabetes: frequent urination, nonstop exhaustion, drinking tons of water and losing weight. When my husband and I eventually took her to the doctor, it took him all of one minute to hear the symptoms, smell her breath and realize what was wrong. We were whisked away from Centreville, Maryland, to a hospital in Baltimore via pediatric transport. We spent days in the intensive care unit getting her blood glucose under control and learning about this disease and our daughter’s new world.

We were sent home trying to comprehend that we were now responsible for literally keeping Allie alive, in addition to the regular demands of day-to-day parenting. We realized that we also needed to inform others about this new world, including Allie’s school—even when we still knew so little about diabetes ourselves. Since only one month of the school year remained, I spent my vacation time in the classroom with her. I did not know what else to do about her diabetes care at the time.

During the summer we were even more lost. We became increasingly concerned about the upcoming school year—we knew we could not spend each day in class with Allie. My husband and I felt as though we were drowning in a sea of uncertainty and confusion.

Then, one evening in August, we found our life raft. We attended a Safe at School meeting, having received a promotional flyer in the mail from the American Diabetes Association®. There, I met Crystal Jackson, Director of the Safe at School program, as well as staff from the local Association office.  All of a sudden, we were pulled back onto a boat, a big boat full of people who understood the challenges of diabetes—people who could help. We learned about 504 Plans, how to open up the lines of communication with school staff and ensure that school personnel were trained in managing Allie’s blood glucose.

From that moment, we developed a relationship with the American Diabetes Association office in Maryland and worked with them to raise awareness of type 1 diabetes. We recognized this need because we were that family who did not originally understand the causes and complexities of diabetes. Because we did not know the signs, we just as easily could have let Allie go to sleep the night of her diagnosis—and might not still have her with us today. We were that family who believed the misconceptions and did not realize there were multiple types of diabetes. We wanted to make sure others understood, so no one else would become that family. The American Diabetes Association gave us a voice to do this.

We recently used that voice to pass Safe at School legislation in our state. Just last year, we testified before our Maryland State House committee, sent letters, made phone calls and watched the governor sign the Safe at School bill. We also used that voice to improve our relationship with school staff, which enabled Allie to become her own advocate at school and guaranteed she would receive appropriate diabetes care while she’s there. Her school now has designated a Diabetes Awareness Day to recognize her and the other students living with diabetes. It was amazing see our legislative process in action and how we as advocates can make a difference.

Much like that day five years ago when Allie was first diagnosed, the night of the Safe at School meeting changed my family’s life—but this time for the better. We were finally rescued from the sea of uncertainty and given a voice to improve our daughter’s life.

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View Jennifer’s Safe at School Facebook LIVE chat with Crystal Jackson to learn more about her legislative experiences and the rights of students with diabetes.

The American Diabetes Association leads the effort to prevent and eliminate discrimination against people with diabetes at school, at work and in other parts of daily life. If you need help, call 1-800-DIABETES or visit http://diabetes.org/gethelp.

Through our nationwide Safe at School program, the Association is dedicated to making sure that all children with diabetes are medically safe at school and have the same educational opportunities as their peers. Visit our Safe at School website for information and resources.

Give the gift of fairness — donate now to help people with diabetes facing discrimination, just like Allie.

From: American Diabetes Association http://redirect.viglink.com?u=http%3A%2F%2Fdiabetesstopshere.org%2F2016%2F08%2F24%2Fjennifer-and-allies-story%2F&key=ddaed8f51db7bb1330a6f6de768a69b8