Hello everyone. My name is Jonah. I am 10 years old and I want to let you know why I think supporting the JDRF One Walk is a good cause.
Last year on April 11th I was diagnosed with type 1 diabetes.
I’ve been told that in the next 20 years the number of people diagnosed with type 1 diabetes (T1D) is expected to double. I know there are no good diseases out there, but I have to tell you, this one is especially hard for kids.
For example, most of the kids I know (myself included) are afraid of shots. With T1D I went from needing 1 to 2 shots a year to needing 5 to 7 shots a day. I wouldn’t say things have gotten better over this past year–but thanks to JDRF–things have definitely gotten easier.
You see, JDRF funds a lot of research. Not only are they trying to find a cure for T1D, they are also investing in technology that make it easier for people to live with this disease. For example, thanks to research funded by JDRF, insulin pumps can also now act as an artificial pancreas. This means my pump will now automatically stop insulin delivery when my blood sugar starts going low and will automatically administer more insulin when my blood sugar starts creeping higher. This helps to keep my blood sugar in range more often, which my parents and little sister can appreciate because having my blood sugar bounce up and down all day makes me feel really irritable and cranky.
I also have a device attached to my arm that has a little needle embedded underneath my skin. It’s amazing–it takes my blood sugar every five minutes and then shares the number with my parents so they can know if my blood sugar is going low or high. Even cooler, because of this device, my parents had to give me an iPhone.
Thanks to the research JDRF supports, maybe instead of using an insulin pump whose needle needs to be changed every other day, every two years I’d have beta cells slipped in a little pouch beneath my skin that would work to constantly keep my blood sugar in line. Or even better, maybe the research scientists JDRF funds will figure out a way to safely turn off the auto-immune response in my body and my antibodies would stop attacking the beta cells in my pancreas and type 1 diabetes would be cured.
Because, to be honest, there are still a lot of things I miss out on because of T1D. I miss being able to spend the night at my friend’s house. I miss getting a full night of sleep. I find it extremely annoying when my mom force feeds me juice in the middle of the night, not only because she has to keep waking me up and it makes me cranky and tired, but because she usually spills the juice and it ends up all over me and my pillow and when I wake up my hair is sticky and smelly and she makes me shower.
I miss being able to eat pizza, pasta, rice, corn, anything made with a lot of cornstarch, or popcorn anytime past 3:30 in the afternoon. I also miss being able to eat Swedish fish, gummy worms, and sour patch kids when I’m not low and when I can actually enjoy them.
I know these aren’t big problems, and there are a lot worse diseases out there. But all these issues add up. The thing about T1D is it’s with you every minute, every hour of every day. I was diagnosed recently enough to remember what it was like before diagnosis–and it’s been a really hard adjustment that I wouldn’t wish on anyone no matter their age.
My parent’s keep telling me I’ve grown so much this past year and have become so strong and resilient. Plus, I even finally got that iPhone. But if I could, I’d be willing to trade it all in for one day off without diabetes.
WATCH: Jonah recently told his story at a corporate executive breakfast, inspiring leaders in the San Francisco community to join the Walk: