Amber’s Awesome Angels

Wow, what an emotional weekend. (more…)

We walked in the Omaha JDRF Walk to Cure with friends of ours from Omaha. 
They were on our walk team in Des Moines, but couldn’t make it because of the
snow storm that closed all the roads.

Between Jana and Heidi (the two in the middle), they raised about
$1000 for our walk team, so we wanted to be there with them at their walk. 
It was fun, it was held at a really large park by the University of Nebraska
Omaha’s campus.  They had some games to play, a couple inflatables, and
a stage where they had a DJ.  It was cool to see how other chapters run a
walk.  I got a few really good ideas for our walk, we’ll see what we can
get implemented. 

Here’s a picture of Amber and Maya, who is one of her best friends, taken at
the Walk.

Our Walk awards banquet was held in May, and for the second year in a row our
family team was recognized often. Our team results were outstanding. As a team we raised $21,944, and we had about 120 walkers on our team!! Thank you to everyone who donated and thank you to everyone who was part of our family that day. 
We were the #2 family team fundraisers, for the second year. 

We each received individual trophies for having raised over $1000.  After
complaining last year that he didn’t get to go up on stage and get his trophy,
Austin was too shy to go up on stage to get his this year.  Oh, well, he
still had a trophy to bring home!

A big reason we raised the amount we did was because we received a $5000 matching funds donation from Thrivent Financial. Jeff Olson is our personal financial advisor, and he’s a friend, being a member at our church as well.

Here’s a picture of Jeff with Jenn Howieson, Special Events Manager at JDRF, as she presents him with Thrivent’s plaque, recognizing their support of trying to find a cure.

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.

Well, two and a half, anyway! (Sorry, Kim Letz!)

This past summer at a ChildrenWithDiabetes conference in Orlando, we had the opportunity to meet Miss America 1999, Nicole Johnson Baker. Pictures and story from the first time are here. We were so impressed by her. She was so down to earth and friendly, and she has a great message. We got to hear more of that message this weekend. Nicole came and spoke at our Time to Talk meeting, which is our local support juvenile diabetes group.

She talked about the obstacles that she had to overcome in order to make it to Miss America, as well as the prejudices she faced from people who told her she couldn’t do it. She’s a great inspiration for kids.

Thanks to Animas and Kim Letz for bringing Nicole in to Iowa!!

The Greater Iowa JDRF hosted it’s 8th annual Hope Gala on Saturday, 21 October.  It’s our black tie event where we have auction items available for bidding.  The theme was Wish Upon a Star, and the intent was to raise money for juvenile diabetes research.  There are many regular auction items, “super silent” items, which are items that are a little more pricey than the regular, but not enough to classify as a “live” item.  For the live items, there is an auctioneer who does a live auction for the patrons on the main items.  Tickets are $150 a seat, you can buy a table for $1500 or more, and the more you pay the closer to the stage you sit, and for the $10,000 or more seats, you get personal concierge service from the JDRF staff. 

We spent most of the two days prior getting ready.  We joked that the event should be called the Spandex Gala, as everything was covered in spandex.  Chairs, tables, artwork.  All spandex.  Granted, it looked pretty cool when it was done, but it was a lot of work.   We had 400+ patrons attending, lots of business leaders in the metro.  The honorees of the evening were Jeff and Mary Stier.  Mary is the senior editor of the Des Moines Register.  I’m not sure what Jeff does, or what their tie to diabetes was except that they were friends with someone who was head of the JDRF International Board of Directors. 

Last year I was a volunteer, and worked the whole night in the bank.  This year, Pioneer paid for tickets for Kim, Amber, and myself, so we were part of those 400+ patrons.  Amber got tasked with a few things to do.  She got to sell P. Buckley Moss prints during the silent auction period.  She got to hand roses and thank all the live auction winners, and she got to carry a puppy around during the live auction.  It was one of the auction items.  Let me tell you, that wasn’t the greatest idea (it was the staff’s idea, not mine).  Amber got very attached to the puppy.  As in cried when she had to give it up to the lady that won the bid.  We blame Mom, she won’t let us have a dog.  This puppy was a 10 week old “teddy bear” puppy, which is a cross between a couple other small dogs.  To say it was cute was an understatement.  It was a cuddler, always wanting to snuggle, and it loved to play tug o’ war with it’s blanket.  The staffer who was watching her for the past few days said she would trip over grass in the yard when she was running around.  

She got to sit on stage with Karli, who is a friend of hers who is also type 1, during the Fund a Cure presentation.  Fund a Cure is the part of the program where we just flat out ask for donations.  We start at $10,000 and go down from there to $100.  There is a speech or a video prior to that in order to get people to be motivated to open their wallets. 

 

The evening went pretty well.  There were a few mess-ups, a few things that just didn’t go as planned, and not everyone was bidding like we’d hoped, but we still raised over $354,000 and still counting.  With matching fund donations, we should still be able to beat last year’s total of $384,000. 

All told in the year and a half that we’ve been volunteering for JDRF, we’ve helped raise over $3 million to find a cure.  That’s what’s most important to me with all this effort.  That, and the two ladies in this picture (as well as the little boy at home who wouldn’t have done very well at this event!  Now off to the next event.  Stay tuned for more information!!

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 helped out at a car wash organized by some friends of ours today, with the proceeds going to Camp Hertko Hollow.  The money is used to help pay for kids who otherwise couldn’t afford it to get to camp.  That’s pretty cool, helping out kids that way.  We all think it’s so important for kids to participate in this camp that spending half a Saturday washing cars.  When I was in the National Guard, there was a common bond between my fellow soldiers, that “brotherhood”.  Diabetics have the same bond.   They all share the same experiences, have the same problems, and talk the same talk.  That’s why things like Camp Hertko Hollow and support groups from JDRF are so important, because it gets kids together. They’d raised about a thousand dollars by the time we had to leave, and still had a few hours left. The money they raised was going to be matched by some local businesses. Two thousand dollars is enough to send 3 kids to camp. Just from a car wash. That’s cool.

I helped out at an event at the Amana Colonies Golf Course on Wednesday, 16 August.  It was organized by a couple guys from Grinnell, with the proceeds going to JDRF.  There were about 140 golfers there, including the event’s first female golfer, Abbi Summer of Ankeny.  She won the state 4A medallist honors as the best golfer the last two years, and has a scholarship to attend Kansas State University in the fall.  She was also diagnosed with type 1 diabetes in May.  We met her at the Ankeny Country Club, where her family are members.  It’s interesting when Amber meets someone like Abbi.  Amber’s met so many successful people who have diabetes that it doesn’t even phase her anymore.  She’s met world class athletes and a former Miss America, so it’s nothing to her to meet someone else.  That kind of bothers me, that she doesn’t appreciate their efforts in spite of the disease they share, but it’s also kind of cool.  She’s learned that there is nothing that can hold her back from anything she wants to do, and she’s also learned that it pays off to give back to those who share our desire to rid the world of this disease.  That is an attitude that I’ve done my best to pick up from her.  She’s an amazing little girl, and she’s taught me so much about life.  It’s too bad that she had to be afflicted with diabetes in order for us to learn it.

By the way, the golf event grossed about $25,000.