Fondra Magee recalls the first time her family attended a diabetes advocacy event.
It was September 2010, just two months after Carson, her then 7-year-old son, was diagnosed with Type 1 diabetes.
"We just kind of showed up at the Walk to Cure diabetes in Spokane, to see what it was all about, and it was amazing," Magee said. "It was amazing to be in a place where there were 2,000 people and all these kids ... I cry thinking about it, because I felt like we weren't alone. The support system has been a lifesaver for us."
When Carson was first diagnosed with the serious and potentially deadly disease, Magee was devastated. She recalls grieving while being bombarded with information about how to help her child remain alive with the condition.
Back then, she never imagined her little boy would grow into a powerful advocate in the fight to find a cure for the disease.
Last week, Carson, Fondra and the rest of the Magee family traveled to Denver for the NHRA Mile-High Nationals, as guests of Ford Motor Company and the Juvenile Diabetes Research Foundation. Carson is this year's winner of an annual race car design contest hosted by the organizations. The boy's design was featured on a car that was driven in the Denver races.
A year ago, Carson traveled to Washington, D.C. where he represented Idaho at the JDRF's annual Children's Congress. Magee said that's when they realized that "one voice can make a difference, but there is strength in numbers."
"I remember watching Carson walk down the Senate hall with his little notepad, walking in to have a private meeting with both U.S. senators and Rep. Labrador," Magee said. "It was surreal, because it was my little boy, a 10-year-old at the time, going in to ask these congressmen to sign onto a bill that would give $150 million a year to find a cure. It was powerful."
Magee herself now sits on the board of the Inland Northwest Council of the JDRF. Like Carson, she works to help increase awareness of the disease, and to help find a cure.
"There are kids who are dying because their parents don't know the signs," Magee said.
Children appear to have flu-like symptoms including extreme fatigue and thirst. The disease requires insulin injections or a pump. Untreated, it causes serious complications and death.
It is an autoimmune disease caused by a virus and can strike anyone at any age.
Advocates and researchers are alarmed, Magee said, because the number of people diagnosed with Type 1 diabetes is rising, and no one knows why.
"I talk to the families of newly diagnosed kids at Sacred Heart Hospital," Magee said. "The week that we had to go to a bigger room was devastating."
She estimates there were seven families freshly dealing with the disease in that one week.
"I tell them that it's never easy, but it gets easier as you realize your child can live a healthy life," Magee said.
Can you describe what it was like in the days leading up to Carson's diagnosis?
He was just so lethargic. School had just let out for the summer and I took him to swim lessons and he would fall asleep in the car before I would even get him home. We would go run errands, and he would be asleep every time I stopped the car.
Then we were volunteering for Ironman like we do every year, setting up the banquet, and of course they set up Gatorades for everybody. And he was just drinking one Gatorade after another, thirsty all the time. For us, this isn't for everybody, he had this rash, so I thought it was Fifth disease (a common viral childhood illness).
I was leaving to go out of the country in two days to a disaster relief mission down to American Samoa, and I was packed and ready to go. I thought, there's probably nothing I can do about this since it's Fifth disease, but I'm going to take him in to the doctor, and I did. They said, yeah that's probably what it is.
I was getting ready to leave and I said, 'By the way, he's been drinking a lot lately.' So the doctor said, 'Let's test his urine.' They came in with a blood meter, and then the doctor came in and said, 'I'm so sorry. It's Type 1 diabetes. Pack your bags. I'll meet you at KMC.'
Needless to say, I didn't go on that trip. I think, what would have happened if I had been all the way down in American Samoa, with one flight in and one flight out. His blood sugar was over 400. Normal is between 80 and 120.
He was there five days, and it was a real crash course in Type 1 diabetes.
What was it like early on?
There's so much to it. It was very overwhelming.
I had never counted carbs. Now I had to count every bite that went into his mouth. I had to know how many carbs it was to know how much insulin to give him. He had to have a shot every time he ate. And exercise, we're still trying to figure out how exercise affects blood sugar because it dramatically does.
It's maddening, because you can give the exact same food at the exact same time, the exact same exercise, and you'll get a different (blood sugar level) result.
Was it hard sending your child off to school each day?
We switched schools. We were at a private school, but there was no nurse. I was still so shaken up by the whole thing, I was scared to death. He was a second-grader. So we decided to send him to Ramsey (Elementary in Coeur d'Alene) because they had a full-time nurse.
Victoria Kimball was our nurse, and she has been amazing. I felt so comfortable leaving him in her hands.
When did you realize that your family's story could help make a difference for other families dealing with Type 1 diabetes?
I think that a crisis in your life kind of spurs you on, makes you passionate about that issue. I think it's kind of a natural progression. Obviously, I want to find a cure for my son. But then, when we got involved in JDRF, and we met all these other families and their kids, it wasn't just about him. It was about all these other people, and their stories. Now we wanted a cure not just for Carson, but for all our friends.
How do you deal with any fear or anxiety that comes up regarding your child's health?
First and foremost is our faith. I say this all the time - if the only hope we had was these earthly bodies with sickness and disease, it would seem pretty hopeless. But I feel there is a hope beyond this world for eternity. Still, I'm a human being, and I have all those horrible fears - he'll never go to college, he's never going to drive a car. That's when I do have to stay in the Bible and pray and God gives me just such a peace.
And advocacy, doing this helps me get out of bed in the morning, because I have a purpose. I've seen that in Carson. Sometimes he'll say to me, 'I'm glad I have diabetes because I get to do some fun things, and there are so many kids I've met.' I don't go quite that far.
When we were in Washington, D.C. for the Children's Congress, and all the kids were there to storm Capital Hill, hundreds of kids, and they're all checking blood sugars. Carson was so happy. He wasn't alone.
What advice do you have for parents dealing with a similar situation?
There is always purpose in our pain. It's not always easy to see sometimes, but for me, I cling to my faith.
Don't give up. We have bad days, like everybody else, but there's a purpose for everything, and there are blessings. There are a lot of opportunities that Carson's had and that our family has had, that we would have never had before. There are always blessings that come out of circumstances.
Look for the blessings, every day.