Amber’s Awesome Angels

Walk 2007 was an…interesting… event!  As co-chair we had several issues to deal with.  We had blizzard conditions in Iowa for the two days prior, I80 was closed west of Des Moines to Omaha, I35 was closed north of Ames.  Most of the entertainment bailed or was stuck in the snow, the person who was going to sing the National Anthem couldn’t make it, some of our inflatables got stuck in Omaha, our celebrity (Miss America 1999, Nicole Johnson Baker, Type 1 since 1993), we were short about 2000 walkers from what we normally have at the Walk, and our emcee, who is the head weatherman for TV13, couldn’t make it because he was budy covering the weather.  I had to made several trips between downtown Des Moines and Ankeny the day before and every time I went there were more cars in the ditch, some which had rolled.  Nasty stuff. 

But we still had a great time.  We got different inflatables, a different emcee, a different anthem singer.  Even though my parents couldn’t make it, and Kim’s mom couldn’t make it, among others, we still had a blast.  Whether Kim and I were happy with the amount of hair coloring that our volunteers sprayed in Austin’s hair is another issue, but Austin loved it.  Amber loved hers, and letting the kids have a day of fun was what it was all about.  The Walk raised over $1.6 million, and our family team exceeded all expectations by raising over $21,150!  A great day all around.  Until we got back to Ankeny, at least.  Kim had put an order of 5 pizzas in with Casey’s, as we were going to have people over to our house afterwards for lunch.  When she showed up to pick up the pizzas, they didn’t have an order.  Uh oh.  So we bought as many individual slices as they had, bought all the individual slices that another Casey’s had, and made them make some pizzas for us yet.  We had to scramble, but we got them.  Crisis averted.  Then I had to leave on a flight at 3:40 to go to Washington, DC, for JDRF’s Government Day.  All the Government Relations leaders from all over the US met there for some training and then to lobby our members of Congress.  Made for a long weekend, but it was worth it!

As you know by now, my daughter Amber was diagnosed with Juvenile Diabetes, also called Type 1 Diabetes, on February 15^th, 2005.  Juvenile Diabetes is an auto-immune disease where your body’s pancreas stops producing insulin, which your body needs to deliver the glucose in your blood to the cells which need to consume it to function.  She is insulin dependent for life.  She has to check her blood glucose level many times every day by pricking the tips of her fingers and drawing a drop of blood.  She’s checked her blood glucose all on her own since the second day home from the hospital, because the first night home from the hospital it took her mom and me 3 pokes to get enough blood for the test.  We haven’t been allowed to touch her fingers since.  A normal adult’s blood glucose range should be between 80 and 120.  Hers, as a diabetic, is between 80 and 180. 

If she has hyperglycemia, which when the glucose level goes above 180, she becomes tired and listless, gets headaches, has frequent urination, and nausea.  It takes insulin to bring that level down.  This is a particular problem during school.  Mornings are when her class has all their tests.  Amber frequently experiences hyperglycemia after breakfast, and it definitely affects her ability to perform well on her schoolwork.  If her body goes without the insulin long enough, the body 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 called “The Wasting Disease”, because people with diabetes used to just waste away to nothing as their body consumed itself.  Long term risks with hyperglycemia include eye damage, organ damage, increased risk of heart disease, and many other conditions. If she has hypoglycemia, which is when the blood glucose level goes below 80, she experiences shakiness and dizziness.  Her skin goes pale and she loses coordination.  She has problems focusing, which is a particular problem during school.  She can become easily confused and disoriented and not know where she’s at.  Because of that, Amber cannot be left alone at any time during the day, she is not even allowed to walk to the nurse’s office by herself.  There are many stories of diabetic kids being found unconscious in a hallway because they were low and couldn’t find the right place to go, even though they’d traveled the same path a hundred times.  If not caught in time, hypoglycemia can make a person’s blood sugar drop so low as to cause what’s called a diabetic coma, where the person just goes unconscious, and even can result in death.  Every one of Amber’s teachers had to be trained on how to administer an emergency glucose shot if Amber would ever go unconscious.  A diabetic coma can happen when your blood sugar gets down to the teens or lower.  Amber’s been as low as 29 and 31.  I can’t explain the feeling you get when a number like that pops up on her glucose meter.

Up until November of 2006, besides testing her blood sugar 4 times a day, she was giving herself 3 shots a day.  That totals about 1100 shots a year.  Every year.  She’d been doing the shots herself for about 15 months by that time.  But on the 1^st of November, she got an insulin pump.  That is a device which delivers two kinds of insulin throughout the day.  First is basal insulin, which delivers a little bit of insulin throughout the day.  The second kind is bolus insulin, the amount of which is determined by the carbohydrates in the food she eats as well as what her blood sugar score is now.  The pump itself is about the size of the pager, with an LCD display and a few buttons to enter information.  It holds a reservoir of insulin that is delivered through a tube which connects to an infusion set.  That infusion set has a small catheter-like tube that gets inserted under Amber’s skin.  Instead of needing shots every day, that site only needs to be changed every 3 days.  She’s only 9 years old, and she does all this herself.

The other thing this does is free her up to be a normal kid again.  She doesn’t have to eat at a certain time every day.  She doesn’t have to eat a specific number of carbohydrates every day.  She can stay up late (if we let her!).  She can sleep in.  She hasn’t been able to do that since she was diagnosed.  Things that we as non-diabetics take for granted.  It used to just break my heart to tell her that she has to keep eating even though she was full.  Now if she wants chocolate milk instead of white milk for her school lunch, for example, she can and just has to bolus for it. 

There is hope a cure for juvenile diabetes.  The current research includes work into creating an artificial pancreas, regenerating the cells that create insulin and transplanting those cells into a new spot in the body, and finding the trigger which causes the body to kill insulin-producing cells.  Some of that research work is being done right here in Iowa, at the University of Iowa Hospitals.  There is real hope that a cure can be found within our lifetime.   I want a cure so that I can have my daughter back.  Please join me in trying to find a cure for Juvenile Diabetes by contributing to my walk team.  JDRF was recently endorsed by Forbes magazine as the charity of choice if you want your money to go to what you intend it.  For money donated to the JDRF Walk to Cure in Iowa, over 95% of it goes directly to research.You can go here to make a donation: Rick’s Walk Page

You can also join our walk team from that link as well.  The more support we get the better, we’d love to have you on our team.  Thank you very much.

The Register has an article on twin boys, Austin and Grant Smith, and their fundraising activities.  These boys have absolutely no connection to diabetes, yet they decided they want to help kids with diabetes by raising money to find a cure.  They’ve raised over $10,000 in the last 2 years total, and plan on raising more.  We were there when the boys came off the roof of a Hy Vee after about 60 hour raising money.  They had so much energy and were so happy, it was hard to not be inspired.

We’re beginning to ramp up for the 2007 Walk, which will be held on March 3rd, 2007.  Last year our team, Amber’s Awesome Angels, did truly awesome.  We raised over $13,000 (third most overall) and had 70 team members (4th largest team). 

So far we’ve got $1850 already “banked”, and we’ve got about $300 at home that we’ve raised from various sources.  We’ll be a success this coming year as long as we can earn enough to get Austin a trophy.  When we were raising money last year, we tried to make sure that Kim, Amber, and myself got over $1000 each so we could be recognized at the wrap up banquet.  We didn’t think Austin would care about that.  He did.  He was VERY upset that he didn’t get a trophy and everyone else did.  We’ll try not to make that same mistake this again. 

UPDATE:  We did, Austin is now at $1000.  He’ll be very happy.

If you’d like to sign up for our team, or even make a donation, here is a place to do it!  The links for making a donation and joining our team are on that page.  Thanks!!