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Islets of Hope real people - stories of children living with type 1 diabetes |
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What causes type 1 diabetes? It is generally believed that people inherit a genetic tendency to develop type 1 diabetes, and that some other influence, like a virus, then triggers the onset of type 1 diabetes. Type 1 diabetes is occurs when the pancreas fails to produce insulin, the hormone that allows glucose to enter the cells. This most often occurs as the result of an autoimmune process in which the body's immune system attacks and destroys the insulin producing beta islets cells of the pancreas. When glucose cannot enter cells, it builds up in the blood stream (hyperglycemia) and results in the body's cells starving to death. People with type 1 diabetes must take daily insulin injections in order to live and must regularly monitor their blood sugar levels.
Elizabeth was diagnosed with type 1 diabetes on February 15, 2004 when she was only four years old.
Elizabeth and some
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Real people Elizabeth, diagnosed with type 1 diabetes at the age of 4 An extraordinary child faces her diabetes and challenges her own diabetic mom to get involved
So, as many parents do when their child is diagnosed with type 1 diabetes, I spent countless hours tracking down accurate and reliable information sources and slowly began to understand more about diabetes than even my own endocrinologist seemed to know. I learned important skills for managing diabetes like how to prick a finger so it doesn't hurt, which meters really are the most accurate, and what foods you can safely eat when sugars are high. I also followed every research links and diabetes studies because I wanted to know what my child's A1c of 8.0 or 5.6 really meant for her ten years from now. Elizabeth was delighted I was so interested in her diabetes. Fact is, I had been totally disinterested in my own diabetes and never even once looked up anything about type 2. Now, I read everything I could about all things diabetes and even took better charge of my own health as well. Soon, it was Elizabeth and me: team "kick diabetes in the butt." Elizabeth eventually considered me an "expert." Of course I am not. But she suggested we help others through the beginning stages of diabetes by sharing what we had learned together. She was so insistent (more like relentless) about helping others that I finally went and purchased "for Dummies" books on web design and taught myself HTML and Java. I had to, Elizabeth would not let me give up even when I was tired and my time was short or I was stumped. She often camped out with a blanket and her stuffed dogs on the floor beside me during many of my "all-nighters." Sometimes, I would climb into bed late at night only to discover a love note or picture from her. "Good work Mommy. I love you," she'd write in her beginning handwriting and misspelled words. But her messages were never short on love even if on literary perfection. On August 10, 2005, Elizabeth's first dream project, Islets of Hope, became her reality when we launched the Islets of Hope for persons with diabetes website. She then inspired me to found IPump.org, Inc., a nonprofit diabetes assistance program. Elizabeth was fortunate enough to be placed on an insulin pump only weeks after being diagnosed because of an allergy to buffering agents in all long- and intermediate-acting insulin. Prior to the pump she had to take shots every couple of hours literally around the clock. Her life was so dramatically improved by pumping that only two days after pumping she chirped like a bird discovering spring after a long, hard winter, "I have my life back!" Read Elizabeth's Story: Insulin Pumping Since Age 4
Once again, Elizabeth encouraged me (okay, prodded constantly -- are you done yet? Are we a helping organization yet?") every step of the way while I learned and executed the complicated and very involved process of forming a 501(c)(3) nonprofit corporation. Now, thanks to Elizabeth, even my personal checkbook balances each month because of the bookkeeping skills I had to acquire!. In June of 2006, IPump.org, Inc. was incorporated, complete with articles of incorporation, bylaws and a governing board of directors. Then, when I tackled the massive paperwork (it ended up being over 500 pages in length) for application for nonprofit status, Elizabeth sat with me and counted page numbers, helped with stapling, and even sealed the mailing package shut herself. Elizabeth was unable to attend kindergarten because of a deplorable lack of care and concern in our school district who would not even perform blood sugar checks. Elizabeth wanted to change that, too. So we began an advocacy campaign for diabetic students who have been discriminated against, even naming schools by name on our website. She bravely chose to step forward and tell her story and became part of a class-action complaint against our state's department of education (DOE). She wanted to help other children be safe at school because she was not. In October of 2006, with the help of the American Diabetes Association (ADA) and Disabilities Rights Education and Defense Fund (DREDF), we filed a complaint with the CA DOE as a first step towards litigation. The CA DOE found our accusations to be truthful and compelling and the Upland Unified School District (UUSD) to be in violation of both federal and state law. As a result of our complaint the UUSD was ordered to make significant changes in its policies and practices regarding diabetic students. UPDATE: August, 8, 2007, The ADA announced a victory for students with diabetes in all CA school districts after winning a landmark, class action suit. See California Education Laws to read about these exciting changes. Read Elizabeth's Story as reported in the media:
When Elizabeth heard about a program that gave quilts away to children with cancer she then decided we should make quilts for children with diabetes and give them away free, too. Thanks to Elizabeth, the QD Quilts for Children program was created and in September of 2006 we began filling requests for quilts for children newly diagnosed with diabetes. Elizabeth (now age 8) and her sister Rachel (age 12) help sew many of the quilts! Elizabeth spends time writing to other diabetic children, coloring pictures for them, and has become very outspoken about diabetes. She has a new idea about how to help others, almost every day. Many of her ideas are a little over-the-top (let's take all the children with diabetes to meet the president and stick him with needles). But some of her ideas are great (let's make Christmas cards from artwork by people with diabetes). She meets other children and not only reassures them but instantly befriends them. She proudly introduces her "best friend Emily, the name she chose for her insulin pump, and not once, has she ever let her diabetes get her down or stop her from doing anything that she chooses to do. Elizabeth has now declared that she wants to be the first woman president, or a rock star. She changes her mind about careers all the time. But she never fails to warm my heart, bringing me to humble tears, whenever she says, "but no matter what I want to be when I grow up, I want to be a mommy just like you." Sadly, however, I am all too aware of the likelihood of her passing along type 1 genetic tendencies to her own child, especially should her prince charming have diabetes. I have no idea what lofty and wondrous dream Elizabeth will have next. Her mind never stops and neither does her loving heart. But whatever she decides upon, knowing my daughter, it will be big and powerful and touch upon the lives of others. And, that she will do whatever it takes, to make those dreams come true for herself, just as easily as she has already made the dreams of so many others living diabetes, come true, too. Lahle A. Wolfe, Founder, Islets of Hope; IPump.org, Inc., CEO and
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Elizabeth's school would not even perform blood sugar checks much less give her insulin. So when Elizabeth had to be home schooled during her kindergarten year she was very lonely. How could I say "no" to such a sweet face? (hers and the puppy who came home with us)