Friday 1 April 2011

My Name is Dylan and I have Type 1 Diabetes

Last year my 10 year old son had the pleasure of being the Youth Ambassador for the 2010 JDRF Walk to Cure Diabetes here in Vancouver, and part of his role was to talk to corporations about what it's like to have type-1 diabetes. He wrote his speech entirely by himself, and delivered it bravely and passionately at numerous different companies around the city. He also spoke to his entire school, plus did a brief presentation at the walk itself, the latter being in front of 3500 walkers. His goal was not for the audience to pity him, or feel that he is any less happy because of diabetes, he simply states it like it is and helps people to understand what it means to be a child with type-1 diabetes on a day to day basis.

He is a rock and I am unbelievably proud of him. With the exception of changing infusion sets, making occasional changes to his pump settings, and supervising his care on an overall basis, he takes responsibility for his diabetes. He counts his own carbs, tests his own blood, and enters all of the data in his pump himself. He treats his own lows for the most part, even in the middle of the night. Yes, that's right, he actually wakes up when he gets low in his sleep, though this is a very new thing, as you'll read below. Before last year, middle of the night lows resulted in a full tonic-clonic (formerly called grand mal) seizure. I never asked him to do all of this, he just does it because he wants to. And while diabetes is in the back of his mind all the time, as it is mine, never has he let diabetes stand in his way of living a full, normal, healthy life - not at 6:30am ice hockey practices twice a week or weekend games, not in the division championship game that his hockey team won three weeks ago, not in karate class, and not when playing with his friends. He is open and upfront about being type-1 and he owns it, it will NEVER own him.

Below is the speech that he powerfully delivered many times in 2010. Following the speech he would do a brief Q&A session with the audience. Pretty amazing for a 10 year old (9 last year).

Dylan speaking at last year's JDRF Walk to Cure Diabetes in Vancouver

"Hello, my name is Dylan Thomas. I am a Youth Ambassador for the 2010 Telus Walk to Cure Diabetes in Vancouver. I’m 9 years old and I have Type-1 Diabetes. 

I  was diagnosed with diabetes on November 21st, 2005, 3 days before my 5th birthday. I spent that birthday in the hospital after my parents noticed that something was very wrong. I was drinking a lot of water and going to the bathroom a lot. I was losing weight and I was very, very tired.

On that day my life changed forever. I could no longer eat whatever I wanted whenever I wanted. The only times I could eat were at meal times and snack times.

Every one of my days starts like this: I wake up and do my blood test, which means that I poke my finger with a needle and put the blood into a little machine that calculates what my blood sugar is. I enter the blood sugar number into my insulin pump, and then enter the amount of carbohydrates I am going to eat and my pump gives me insulin. Insulin that I need because my body does not produce enough on its own. After that I head to school. My School day is like a maze – full of twists and turns, but it can be okay, as long as I am careful. At school I test my blood at least 2 more times: once at recess, once at lunch, and sometimes once in the afternoon if I feel low. If the results of my blood sugar tests at recess or lunch are okay, then I head outside to play with my friends. If I’m low I have to stay inside until my sugar level goes up, which means I can miss recess or lunch altogether. But the worst part of my day is at bedtime. If my sugar level gets too low during the night, I will have a seizure and my mom has to give me a special injection during the seizure to keep me from going into a coma. I have had 4 nighttime seizures since I have had diabetes.

What would a cure mean to me? A cure for diabetes would make me feel free. Free to eat what I want, when I want. To eat my Halloween candy on Halloween and my Easter eggs at Easter, free to be just a regular kid. Right now there is no cure for type-1 diabetes, but we can change that with your help. On June 13th, join me and the many other children, teens and adults with diabetes as we walk to find a cure, so kids like me can live happy and free.

I don’t let my diabetes get me down, but I do want a cure so I don’t have to deal with it every minute, every hour, every day. Thank you for listening and have a great day."

No comments:

Post a Comment