Every two years, Children’s Congress delegates between the ages 4 to 17, represent all 50 states and the District of Columbia.  As participants in Breakthrough T1D’s Children’s Congress, they have a unique and empowering opportunity to help Members of Congress understand what life with type 1 diabetes is like and why research to find the cure for diabetes and its complications is so critical.  This term we would like to introduce the Las Vegas, Nevada 2013 Children’s Congress representative, Reed Gialketsis!   Reed will be one of over a hundred children with type 1 diabetes to gather in Washington, D.C. to meet face-to-face with some of the top decision makers in the U.S. government.

Reed was diagnosed with type 1 diabetes in 2004, has served as a Nevada Chapter Youth Ambassador for the past three years, and this year served as a Youth Ambassador Co-President.  Reed, your Youth Ambassadors, Nevada Chapter Staff, and citizen’s of Las Vegas and all of Nevada congratulate and wish you much success in helping Members of Congress understand type 1 diabetes and getting them to continue supporting type 1 diabetes research funding.

From Your Breakthrough T1D Family – Congratulations, Reed!

 Reed is a wonderful blogger and wanted to introduce herself and share her thoughts on being a Children’s Congress delegate.

Diabetes isn’t easy.

‘Wow, genius,’ that sarcastic voice in the back of your head is saying, ‘I could’ve told you that.  This is the girl you’re sending to Children’s Congress?  Man, we’re in greeeeat hands.’  I know, I’m very big on clichés.  Bear with me, because I will come back to this.  Trust me.

First and foremost, my name is Reed Gialketsis.  I’ve lived with type 1 diabetes for about 10 years now, and yes, this summer I will be representing Nevada in Children’s Congress.  I can’t begin to tell you how excited I am to be a part of this.  We’ve had Las Vegas Youth Ambassadors attend CC for the last 2 sessions, and I’m thrilled I get to carry on that tradition.

I feel like everyone going to Children’s Congress is going for the same reasons and different reasons at the same time.  The same reason, is (duh) to gain funding and put a stop to diabetes.  People are getting diagnosed with this disease every day, and that’s not cool.  But at the same time, I feel like we all have different reasons for going; the relationship between a person and their diabetes varies; no two are alike.  And those who don’t have diabetes are probably laughing a little right now because I’m talking about it like it’s a living thing and not a disease, but trust me, sometimes it’s hard to tell.

My reason is fairly basic, and if you’ve heard me talk about diabetes you probably know what it is.  I feel like no person – child or adult, should go through what I have had to go through.  The carb counting, the late nights of checking blood sugar, feeling like total crap because your blood sugar has been in the 300’s for six hours and it just started to come down.  There are days when I literally cannot focus at school because my blood sugar is too out of whack.  And I absolutely despise that feeling.  And it isn’t just the fact that I’m going through it that makes it bad; it’s the fact that there are kids so much younger than me and people so much older who have felt the same thing.  Nobody deserves to know what diabetes feels like; I don’t care who you are, but you don’t.

And the thing is; it’s not stopping.  Breakthrough T1D does this thing called ‘Bag of Hope’, where we send newly diagnosed kids a backpack full of diabetes related stuff.  They’re delivered to the hospitals all over town, and we know how old these kids are because there are slips parents fill out that Breakthrough T1D gets.  I’ve seen the ages on those slips range from 18 years to 18 months.  And that bothers me.  There are kids who are going to grow up with type 1 diabetes; who will never truly get to know what it feels like to be a kid because diabetes is always creeping up on them.  It’s sickening, and unless we ban together and start pounding out a cure, it won’t get better.

Now I know diabetes research has done some amazing things already; the guys in the fancy lab coats are already working on an artificial pancreas, which if I correctly recall is going through some human testing.  Insulin pumps and continuous glucose monitoring systems are making diabetes much more manageable, and that’s great. And I don’t want to sound ungrateful, because these are huge steps toward getting a cure.  But at the same time, these things aren’t a cure to me.  As kids, we may rest easier having them around, but nobody’s going to get a good night’s sleep until we cure diabetes for good.  And there’s no question that we will cure it eventually; it’s just a matter of finding that cure as fast as possible.  That’s what I want to accomplish.

I know that’s an awful lot to take in, especially for someone without diabetes.  To be honest, I have no idea how I’m going to manage to fit all that in when I’m talking to people at Children’s Congress.  I don’t even know if I can fit all that into my time with legislators on Capitol Hill, or make it any easier to understand.  But I can promise you I’m going to try; we’re all going to try.  And it’s no question we’re going to kick butt at it.

I’ll leave you today with a quote from one of my favorite webcomics  (oh, I know, a webcomic.  So teenager-y).  To be honest, I don’t remember the exact context it was in, and I had to take out a word or two for being a bit, ahem, adult.  But the moment I saw it I instantly linked it to diabetes.  I don’t know why; maybe it’s because I’ve felt like this at certain points, and I know others living with type 1 diabetes I know have felt this way too:

“I’m so sick of telling this story to people over and over, and nobody understanding what the heck I’m talking about.  It’s all so simple.  [Or] no, actually, it isn’t; it’s a…stupid story that makes no sense, and maybe that’s the problem.”

Diabetes isn’t easy.  But I’m hoping together, we’re going to make it a little easier.