Our Story
Diabetes is a nasty disease. It is insidious, it is overwhelming, it affects everything you do. I know, my daughter was diagnosed with Juvenile Diabetes in 2005. Since her diagnosis, we’ve become very involved with the Juvenile Diabetes Research Foundation. One of the things we do is to be an Ambassador. What that entails is that any time a company wants to do a Walk kick-off event, they request an ambassador to come and tell their story. We’ve done 5 or 6 of them so far, and they are very hard to get through, as we get very emotional. Here are our stories, my daughter’s is first.
My Daughter’s Story
Hi! I am Amber Langel. I am 10 years old and I have Juvenile Diabetes. I was diagnosed February 15, 2005. That day, my mom and dad took me to the doctor because I was thirsty all the time and very tired. The doctor sent me to the hospital. When I got there I was officially diagnosed with diabetes. When we tested my blood sugar there it was 475, and my sugar is supposed to be within 80 and 180. Before we could leave the hospital my mom and dad had to learn how to give me a shot and test my blood sugar. That night it took them 3 times to get enough blood, so I just did it myself. I’ve been testing my own blood sugar ever since. After a few months I started doing my own shots, too. In the first year I gave myself about a thousand shots. Here is what one month of shots looks like.
Now I have to test at least 6 times a day, and I have an insulin pump instead of shots. Here’s my pump, it is connected to by a tube to an infusion site on my body. I wear it all day long, every day. The site has a little plastic tube that goes under my skin, and I have to change that site every 3 or 4 days. I like it a lot better than shots. Every time I eat I have to enter the number of carbs in that food, so I can get the insulin I need. That’s called a bolus. It also gives me a little bit of insulin all day long, called a basal.
At school I sometimes go low. I get very shaky and have a hard time paying attention. If I go high I get very tired and my head hurts. I bring a snack to eat every morning, and my teachers let other kids bring a snack, too, so I’m not alone. If someone brings treats for the class, I can’t always have them because of the carbs in the food. Sometimes I have to leave class and go to the nurse’s office to go test because I feel low, and I miss class time. For the whole school year I’ll miss almost 3 full days of class just to test my blood sugar.
We had a writing assignment in school where the topic was “The World Would be a better place if…”. My best bud wrote hers on diabetes, she said that she wished there was a cure for diabetes so I could go to her house and my mom wouldn’t have to worry about me.
My little brother Austin doesn’t like to watch me change my site, and he really doesn’t like to test his blood sugar. Even though he’s annoying sometimes, I don’t want him to get diabetes. But soon he won’t have to worry because WE ARE going to find a cure.
I love the people at the JDRF office. They gave me a teddy bear called Ruby. She has diabetes, too, and I love her very much. She’s the best bear in the world. She has a brother named Rufus, who goes to boys with diabetes. I practiced giving shots to Ruby before I gave them to myself. And now I put sites on her. She loves it so much!
Why do I want a cure? I have a lot of answers to that question, but here are a few. I will not have to poke myself or change my sites. Not only will I will be cured, but other kids will too. My last reason is so I can be like a normal kid. Thank you for listening and helping me and other kids with diabetes to find a cure. I hope to see everyone at the walk. Thank you.
My StoryHello, my name is Rick Langel, and I’d like to thank you for letting us come and talk to you about the inspiration in my life, my daughter Amber. Amber has Type 1 diabetes. Take a walk in our shoes.
“Daddy, I’m thirsty.” It’s such a simple request, and common for any 7 year old to make. As a parent it’s an easy thing to fix. That’s what we do as parents, we take care of our kids. If they are thirsty, we get them a drink. If they fall and scrape a knee, we get them a band-aid and a hug. “Daddy, I’m thirsty” was something we’d heard often. Amber had been sick on and off for a few months with strep throat and several colds. Drinking fluids made her feel better. But then the requests became more urgent and came more often. She was thirsty all the time. It was nothing for her to sit down for supper and drink 3 or 4 glasses of milk, and then be thirsty again an hour later. We didn’t think much of it, figuring it was just a sore throat. But the drinks seemed to go right through her. She was going to the bathroom a lot. She was waking up in the middle of the night to go to the bathroom, and then drinking a glass of water or two before she went back to sleep. She never woke up in the middle of the night before that. She was always tired, we attributed that to waking up a lot. When she started going to the bathroom 3 times a night or more, we finally decided that something was wrong.
Many people probably aren’t able to say that they have had life changing moments where their entire world changed. Mine happened on February 15th, 2005. That was the day we brought her to the doctor. None of the tests they ran were positive for anything which would explain the problem, until they checked her urine for signs of diabetes. To say we were stunned is an understatement. Not our child, not this disease, no way this is true. We were sent to Blank Children’s Hospital, to the Pediatric Endocrinology unit there, and they confirmed the diagnosis. A healthy person’s blood glucose range should be between 80 and 120. When Amber was diagnosed, her blood glucose level was 475.
We then began a program of education for diabetes where so much information is thrown at you so quickly, and at a time when you’re still trying to get a grasp on even having this diagnosis, that you hope you didn’t miss anything that you really needed to know. The doctors and nurses taught us the minimum we would need that day to get Amber through the night. They told us that the process that caused her diabetes probably started 3 to 4 years earlier, but that day all that mattered was that Amber was going to be getting a shot, and she didn’t like it at all. The doctors gave us a lot of information, showed us how to test blood sugar and give those shots, and then sent us home. She had her first few units of insulin that day, and slept through the night for the first time in almost 2 months. Over the next two weeks, we spent many half days at Blank learning more about how to manage diabetes. It’s overwhelming. I often got to the point where it was just too much, and I would just put down whatever I was reading and cry for a while, and then I’d be ok for a couple days again. I’ll never forget, though, that first day in the hospital when Amber, as innocent and naïve as can be about not knowing anything of what lay ahead for her, sat in her mom’s lap and told her not to cry, that everything would be ok. After the first couple times we gave this speech Amber asked me why I cry when I talk about her diabetes. Apparently it had never occurred to her to be sad that she has diabetes.
So what is diabetes and why do we need a cure? Everyone’s heard of it, and you probably know that it has to do with insulin. The cells of your body need to burn glucose in order to work. The insulin in your body picks up that glucose from your bloodstream and delivers it to your cells. When your body doesn’t have enough insulin, the extra glucose remains unused in your system. This is a condition called hyperglycemia. Hyperglycemia is when the glucose level goes above 180, and a person becomes tired and listless, has frequent urination, headaches, and nausea. It takes insulin to bring that level down. If a body goes without the insulin long enough, it begins to burn fat cells, and when it runs out of fat cells it starts to break down muscle and use that for energy. Diabetes used to be nicknamed “The Wasting Disease”, because a person would literally waste away to nothing as their body broke down all the muscle and stored fat on the body. Long term risks with hyperglycemia include eye damage, organ damage, increased risk of heart disease, and many other conditions. A 10 year old shouldn’t have to worry about such things. Hypoglycemia, which is when the blood glucose level goes below 80, is when a person experiences shakiness, dizziness, and confusion. When Amber is low her skin goes pale and she loses coordination. She can become easily confused. She has problems focusing and concentrating, which is a particular problem during school. If untreated, hypoglycemia can cause what’s called a diabetic coma, where the person just goes unconscious and can even die. Imagine sending your child to school and not being able to allow her to be alone ever, because of the possibility she may go low and pass out. Imagine sending your child out on a sunny day to ride their bike over to a friend’s house, and hoping that she doesn’t go low either on the way there or the way back, become confused and disoriented, and not know how to get home. This is the reality of life with diabetes. A 10 year old should never have to be concerned with going into a coma or dying just because she didn’t eat enough or took too much insulin. Insulin isn’t a cure, it’s only a band-aid until the cure can be found.
An estimate in the year 2000 said that 1 in 3 kids born that year or later would develop diabetes at some time in their life. The rate of diagnosis is increasing. In 2000 it was increasing by 3% per year, and now it is increasing by about 5% per year. In the US, 35 kids a day are diagnosed with type 1 diabetes. That’s 13,000 kids a year. Amber showed you what a month’s worth of shots looks like. To put it in perspective, that’s about a thousand shots a year. In the last year while on the pump she changed her pump site about 100 times. By the time she graduates high school she will have changed her site 700 times. In the first year after diagnosis, Amber pricked her fingers to draw blood 1500 times. In the last year while on the pump, she pricked her fingers 2,200 times. By the time she graduates, she will have pricked her fingers over 20,000 times. And it isn’t cheap, either. Her insulin pump costs $6,500. A single blood sugar test strip costs about a dollar. To change an infusion site costs about $18. A single vial of insulin, which lasts about a month for Amber, costs $80. That’s at least $5,000 a year, every year, just for basic supplies, not including day to day supplies such as glucose tablets to treat lows, and the regular doctors visits required.
One Christmas a couple years ago, Amber drew a couple pictures for the staff at JDRF. One of them was a picture I’ll never forget. In the middle in big letters it said, “Make Every Day Good”, and it was surrounded by pictures and other sayings, including, “Smell all the flowers” and “Smile every day”. This is the attitude that Amber takes with her every day, in everything she does, and she’s an example for all of us. The first summer after she was diagnosed, Amber gave me two things for Father’s Day. First was a poem called “Footprints” that talked about slowing down so that your child can follow in your footsteps. The second thing she gave me was this beanie baby, called “Hope”, which is a bear on its knees praying. When she gave that to me she said, “Do you know what my hope is, Dad? I hope I don’t have diabetes for my whole life.” That’s when I committed to doing anything I can do to make that a reality. I simply can’t look into her eyes without knowing that I’ve done everything I can to make her better. I have those two items sitting on my desk at work, and look at them often during the day. They remind me to always make every day good. If Amber refuses to have a bad day with everything she has to deal with, then I have absolutely no business getting upset with office politics or an assignment that I don’t like. I simply won’t let myself have a bad day because it’s not the example that my daughter sets for me. Her attitude is infectious, and it’s changed me forever.
Our JDRF office is absolutely wonderful. They spend countless hours supporting families like ours, helping us find a cure. JDRF was founded in 1970 by a group of parents of kids with diabetes, has always focused on a single goal: accelerating research progress to cure diabetes and its complications. JDRF has awarded more than $1 billion for research since 1970 and was named to the Forbes list of ten best charities. In 2007, our Greater Iowa chapter raised $3.5 million for diabetes research with over $1.7 million of that coming from last year’s walk. This year’s walk goal is $1.8 million. A cure is in our future, but we need your help, and you help by donating and raising money to fund that cure. We can’t do it without you.
Within a couple weeks of diagnosis we were visited by another family with a diabetic child, bringing a Bag of Hope from the JDRF office. It contained a teddy bear with diabetes, called Ruby, whom you’ve already met. It had a free glucose meter, as well as pamphlets, a book, and a video. These are all paid for by outside sources, because JDRF’s money goes to funding research. They gave us a connection to a family who has been through the same things we were, and lots of information about resources to learn more. JDRF hosts a monthly support group meeting for families with diabetes, and we’ve made deep and lifelong friendships there. They allow us to volunteer, which gives us a positive outlet for dealing with the grief we have. And they do it with the best record for the percentage of funds that go to funding research. Please know that every dollar you raise for an event like the Walk goes for real and tangible help for innocent kids who did nothing to deserve this horrible disease.
I hope you now understand why my 10 year old daughter is my hero, and why we need to do everything we can to help kids like her. Our hope for a cure lies with you and your dollars raised to support the research. Thank you and I hope to see you at the walk!