Wednesday, October 04, 2006

Say Hey to Babs Boxer & Di Feinstein~Children's Congress 2006

Do you know about Children's Congress? The Juvenile Diabetes Research Foundation sponsors a mock Congress every year. Each June, two children from each state get to go to tell members of Congress what it's like to have Type 1 Diabetes. The selection is based on a letter written by the kids. We've been working on ours since AUGUST and finally submitted it yesterday, a couple days shy of the deadline.

My son's chance of getting in is a long shot--California is a big state, and they only pick two children. But to me, the important thing isn't whether he gets the honor of getting this important job. The important thing is that the Senators and Representatives read each and every letter. Also, writing it was a tremendously valuable experience for him. At the end, he was pretty pleased with himself about all he has done.

I'm including his letter here. I think it says it all.

Dear Member of Congress,

Hi! I’m nine years old and I’m writing to you because I would like there to be a cure discovered for Type 1 (Juvenile) Diabetes. I hope you and your fellow Congressmen and Congresswomen can help.

I’ve been living with Type 1 Diabetes for more than two years. I remember when I was diagnosed with diabetes, and it was horrible. I was in the car at 5:30 AM, on the way to the Emergency Room, completely exhausted and empty of all fluids since I had thrown up so much. I was rushing there because earlier that week my doctor had told me I had strep throat. It seemed to be getting worse. I could not walk, stand, or speak. My skin was so dry it was like paper, and I had begun to hyperventilate. My mom and dad thought that my strep throat might be turning into pneumonia, or maybe something else was wrong.

When I got to the hospital, I was wheeled in to see the ER doctor. I was so sick I got to go to the front of the line. I was really out of it, although I know I really had to go to the bathroom, but I had no energy to get there.

They put an oxygen tube in my nose so I could breathe, then brought in a pediatric specialist to test my blood sugars. But I was so dehydrated the meter wouldn’t work. My blood sugars must have been really high because I was in diabetic ketoacidosis and I was almost in a coma. My veins were collapsing, so they had to bring in a doctor who works on premature babies to start a saline IV. Without an IV, I would die of dehydration. Fortunately, she got an IV started. At last, I fell asleep.

When I woke, I was surprised to find myself in an ambulance, along with my new teddy bear, on the way to UCSF Medical Center. My mom rode with me and explained that the ER doctor believed I had Type 1 Diabetes and that’s why I’d been so sick for so long. At UCSF, I got an insulin IV and a potassium IV. That makes three IVs if you’re not counting.

I’d gone to four different doctors before I found out I had Juvenile Diabetes. This is a lot for one person to handle, especially a kid. That’s why I think finding a cure is so important. Kids should be playing sports and hanging out with their friends, not sick in hospitals.

I’ve learned to live with Type 1 Diabetes, but it isn’t always easy. I have to poke myself all the time. At first it hurt, but now it doesn’t hurt much. To get my insulin, I have to put a needle as long as my pinky into the skin on my stomach. Sometimes I miss and hit a painful spot. I worry about what I eat, because if I take too much insulin or too little insulin, I might get Low or High and then I feel sick. Having diabetes is a lot for a kid to take care of.

Promoting diabetes awareness is important to me. The most important thing I did happened a few months after I got diagnosed. There was a proposition on the ballot called Prop 71 that would allow stem cell research in California. I think stem cell research is important for people with diabetes because it might help scientists find a cure. I held a microphone and talked in front of the whole meeting of the Marin County Peace and Justice Coalition in San Rafael. A lot of important people have talked to them before, but this time it was just a kid. Me. It was hard to figure out what to say, and I was a little nervous, but I said it. I showed everyone my meter and talked about what diabetes is like and why I support stem cell research. Prop 71 passed, and I helped.

Along with my friends and family, we did the Juvenile Diabetes Research Foundation’s Walk for the Cure in 2005 as “The O’Connor Lions” to help raise money for a cure and to promote diabetes awareness. The Walk was fun because I saw a bunch of my friends and they’re more aware of diabetes now. Also, we earned over $5,000 for JDRF! My friend Emma, who is in middle school, even decided to volunteer to help at the Walk in 2006. I’ll bet Emma would not have thought of doing that without walking with me last year. This year, we are walking again to raise a bunch of money.

I’ve also talked to people around my school about diabetes. Kids wonder what my meter is and why I always carry a pack with all my supplies. If kids make fun of me or unzip my diabetes pack, I explain to them what diabetes is and why I need my stuff. I’m really nice, even if they’re mean. My whole class knows about diabetes because my mom and I gave a presentation about it at the beginning of the year.

Another thing I did was diabetes camp. I learned more about how to count carbohydrates and I got to go fishing with other kids with diabetes. Being a kid with diabetes is lonely sometimes, or actually all the time. At camp, I helped newly diagnosed kids learn about diabetes and not feel so alone.

In addition, I’ve been in some focus groups to talk to people about technology for diabetes. These people are trying to make inventions, like the “dream meter” that I want. I had to tell them what is hard and what is easy about diabetes. Trust me, diabetes is not easy! I helped other people with diabetes by doing this because now there will be better meters, thanks to my ideas.

I also donated twelve vials of blood for diabetes research. The doctors put a big needle in my arm and sucked out a lot of blood. I didn’t have to do this, I wanted to. I helped the doctors be more aware of what was in my blood. Maybe this will help find a cure.

I had fun auditioning for a OneTouch blood sugar meter commercial with jazz musician BB King. I’m a jazz musician too. I play the saxophone! Even though I didn’t get the part, many people were curious about what it’s like to audition for a commercial. I was able to tell them a whole lot about diabetes, too.

I hope this letter has shown you a little more about diabetes. Diabetes should be important to you, because some kids can’t handle diabetes, and they want a cure, just like me. I can handle diabetes, but what about the little kids, or the babies? They can’t test their blood sugar and don’t understand what’s happening. I can’t vote for nine more years, but please support diabetes research now and I promise I will vote for you when I turn eighteen.

[my son's signature]