Jonathan Vogel speech
Father’s Day 2006

My name is Jonathan and I’m here to tell you about me and my life with diabetes, a chronic, non-curable disease.

I am 9 years old.  I was diagnosed with type 1 diabetes just a year ago.  I remember that day very well.  It was Saturday morning and my mom had come from the gym when I told her that something weird had happened to me the night before.  I said “Mom, I went to the bathroom like 5 times last night”.  She gave me a weird look and, oh!  WAIT I guess before I can continue, I should mention that I have a little brother who was diagnosed with type 1 diabetes almost 4 years ago when he was only 2.

So my mom gave me a weird look and took my brother’s meter to test my blood glucose.  It was in fact very high, it was 558.  She tested me again like she thought it was a mistake, but the second time it was just as high.  I remember I had my first baseball game of the season on that day.  My mom gave me a shot, improvised a kit and my parents took me to the game.

I am a very independent boy and my parents have taught me to be responsible and in control of my diabetes, however it hasn’t been that easy.

I always have to count every single food I eat.  Sometimes it’s easy if the label shows the carbs, but when I have to estimate, sometimes I get it right but other times I don’t, and then I feel very bad.  I use an insulin pump that connects to my body.  My dad changes my pump site every other day because if we wait longer my skin gets infected and I get a pretty bad rash.  I test my glucose levels almost every two hours because I am very active, and that can be an inconvenience, mostly when I have to stop everything I’m doing to go test myself, but I better do it because my mom told me once that there were no short cuts with diabetes, the price of not testing can be high.

Last month I went to school to have breakfast with my dad and my brother, they call it Dads and Donuts but my dad calls it Kids and Carbs, and of course all they had was donuts.  We guessed the carbs and got our insulin, my dad went back home and my brother and I went to our classrooms.  Two hours later when it was time to test again we both were pretty high and that slowed down our days.   And then just weeks ago I had breakfast with my mom and we had bagels, this time I over-estimated and two hours later I was very low.  I had to stop everything I was doing and sit down to eat. I would prefer if my days could just go without this.

When I am low my brain feels dizzy, my hands shake, I get very tired and hungry, and can’t think,  and make I  mistakes,  This is not good at school because I don’t want my teachers to think I am not paying attention.  When I am high, the light hurts my eyes, I get very thirsty, I get a headache and I really feel bad. 

Sometimes grown ups feel pity for me and I don’t like that, I rather they feel admiration and respect for what I do everyday.  Other times they treat me differently and really set me aside, and I want them to know that I am not different than the rest.  It is very difficult to deal with people’s perceptions and lack of information, I have to create awareness and share knowledge so they understand how serious is my disease but at the same time how equal I am.

Sometimes I worry what would happen to me at night if I get low and my parents don’t wake up to test me. I was crying once very scared and my dad reassured me that he always sets his alarm and that he is a light sleeper and when he is very tired my mom takes over.  Sometimes it’s hard when I go to a play date or a sleepover because I have to call my parents all the time, but I really don’t mind because they let me go and my friends still invite me.  I have the best friends in the world.

Sometimes I like to take a break from diabetes and my mom or dad test me and they let me eat whatever I want, but I can get very high or very low afterwards.  I would really like to take a break from diabetes for a whole day, but I can never do that.

When I grow up I want to be a basketball star or a rockstar.  My parents tell me that I’m already a star.

I really want to find a cure for diabetes so my brother and I can just wake up in the mornings and live our lives without poking our fingers all the time, without poking our body all the time, without having to take care of our pumps, without the fear of getting too low.  It would be nice to be free to eat anything without paying attention to the carbs and without pricking my finger.  I know I can live with diabetes but I would rather not have it.  It is like wanting to live free.  My brother and I hope we find a cure for diabetes soon, so that we can just be kids.

I hope that all of the people here tonight understand how bad it is to know that as of today I will have this disease for ever,  I don’t want to have it for ever because I’m smart and know how bad it will get.  I would really like if you could give a lot of money so the doctors can find a cure soon, very soon.  If I was a grown up I would give a lot of money so children can live free of diabetes.

Thank you.