Hello, my name is William and I'm 6 years old! This year, my family will be taking part in our 3rd JDRF Walk to Cure Diabetes because I was diagnosed with Type 1, or juvenile diabetes, in November of 2010 when I was 3 years old. It was a tough day for everyone and is one that my parents will never forget.
We've come a long way in the past three years. I started on an insulin pump just three months after my diagnosis date and now get to push all the buttons when I need insulin. I have taken part in two Stanford University research studies. One study allowed me to "try" out a continuous glucose monitor and I now have one of my own. My CGM takes my number every 5 minutes and tells my pump. My pump will then alarm if my number is predicted to go low, which can be very dangerous. I still have to check my number by pricking my finger, but not as often and I have much tighter control. Another study had me to try out a smaller sensor that was seeking FDA approval for children.
Despite having diabetes I live an active and happy life. I play on a soccer team that my Dad coaches and love to run up and down the field. I ran in my first 5K at the JDRF Coloma River Run this past May and got 3rd place in my age group! I also like playing at the park, pretending to be an American Ninja Warrior, and swimming at the indoor pool in town. One of my favorite things is reading or playing games with my brother Neil. Even though diabetes is always with me, I can do everything other kids my age do! The only thing I can't do is drink juice all the time.
My brother, Neil, doesn't have diabetes. He does know that I have to check my number and that I've "gotta be patient" when my mom or dad are helping me. He also likes to read the number on my meter -- he's a silly kid. He sometimes wears a pretend pump because he likes to be like me. Neil is part of a Trial Net Study which screens him yearly for antibiodies that may predict the onset of Type 1 diabetes. So far he has tested negative and hopefully he will not get this disease.
People often ask my Mom what it's like to have a child with Type 1 diabetes. Here's 24 hours in my life. No joke!
7:08 am Check BG - 107. Count carbs, weigh food, and dose for breakfast.
7:25 am Eat breakfast.
8:30 am Since it's a PE day, Mom sets my pump on a special setting. This way it automatically turns down before PE so I don't risk low blood sugar. She also helps me pack my snack and writes down how many carbs I will eat later. This all goes in my snack bag.
9:30 am Snack time at school. I wash my hands, check my number, and enter in the amount of carbs on the note in my snack bag. My WONDERFUL Kindergarten teacher oversees me to make sure I stay on task and don't enter the wrong number. I never have messed up, but it's so great to have people looking out for me. If my teacher is absent, the school principal, nurse (if it's her one day on campus), or school secretary will come in to help. Mom says I'm SUPER lucky to have such a wonderful team.
10:46 am Pump alarms. Says "LOW PREDICTED" so I check BG - 88. My teacher calls my Mom. Since I'm heading to PE soon, Mom says to give me 10 fast-acting carbs. A BG of 88 is actually a safe place to be and my pump will turn down, but this way no one worries. I only had one real low blood sugar during my entire Kindergarten school year and only a handful of these "lower numbers".
12:10 pm Mom picks me up from school. My teacher gives her an update on how my diabetes was the rest of the day.
12:36 pm Check BG - 167. Count carbs, weigh food, and dose for lunch.
12:45 pm Eat lunch.
2:16 pm Check BG - 283. Give insulin to bring down blood glucose. Who knows why it's this high, maybe from the extra carbs given earlier in the day for the not really a low? "That's just diabetes." Since I want snack we count carbs, weigh food, and dose for snack too. I'm going to have to wait to eat because my blood glucose is on the higher side.
3:00 pm FINALLY get to have that snack!
3:30 pm Put on 'magic cream' to numb my arm for the new sensor because it's a huge needle.
4:00 pm Mom uses the 'launcher' and inserts my new sensor and tapes it all down. I don't feel a thing because of the magic cream. If I'm cooperative it takes about 10 minutes. We only do this once every 6 days. Mom says thank goodness for that!
4:46 pm Check BG - 115. Count carbs, weigh, and dose for dinner.
5:00 pm Eat dinner.
6:00 pm Bath time and pump change day. I get to remove my infusion set. After bath Mom or Dad put on the new set and pump. We do this every three days and I usually don't even say ouch.
7:00 pm Check pump screen. I'm in range so I go to bed - no finger check tonight!
10:15 pm While I'm sleeping Dad checks my BG - 139, so he goes to bed. Some nights, depending on my number, my parents give me insulin while I sleep or turn down my pump. They have an alarm in their room that wakes them up if I drop too low at night.
2:34 am The alarm in my parents room alarms. The screen says "LOW PREDICTED". Dad comes into my room and checks me again, BG - 105. That's still an okay place to be, so he silences the alarm and sets their alarm clock to recheck in a half hour. If my number keeps dropping they will wake up to give me a juice.
3:00 am Alarm clock goes off. Mom checks the number on the screen in their room. It reads BG - 126, so back to bed she goes.
My family's hope is to find a cure for Type 1 diabetes so that perhaps one day I won't have to live with it 24/7. In the meantime, we hope that the artificial pancrease gets FDA approval so I won't have to think so much about my diabetes. It will check my blood sugar and dose the insulin independently of me checking or telling it how many carbs I eat. My pump and cgm are basically a very early 'version' that still requires me or my parents to make decisions on dosing insulin. It will be lifechanging tool!
Now, more than ever, you can make a crucial difference. Won't you please give to JDRF as generously as possible? Together, we can find better management and a cure!
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Amanda, Barry, Brandon & Luke
Bill and Beth Ponseti
Bob & Alisa DeLeo
Gma and Papa Mark
Grandma and Grandpa Ludlow
Grandpa Bill and Grandma Christine
Great Grandpa and Great Grandma Ludlow
Mr. Alex Melli
Mr. William's Family
Mrs. Jayme Kugley
Mrs. Tanya Thompson
Ms. Stephanie Derammelaere
Ned & Diane Ludlow
Papa Mike and Sharyn
The Avakian Family
The Avery Family
The Carte Family
The Davidian Family
The Rubinstein Family
Todd and Brandi Flanagan
Uncle Dave and Aunt Coco
Walking with William