INCURABLE PERSISTENCE: Determined Teen Seeks a Cure for Juvenile Diabetes

Kaitlyn confers with U.S. Senator Barbara Boxer.

Only 15, she already has her own business card and is a prestigious board member of a large national organization. A couple of weeks ago, she was hobnobbing with politicians on Capitol Hill. When Barbara Boxer saw her posing for pictures, the Senator halted the official photo session to have a private word with her. “Kaitlyn,” she called out across the crowded room.

Kaitlyn is Kaitlyn Malarkey, a diminutive, button-cute sophomore at Bonita High School who is not only a board member, but also a youth ambassador and official spokesperson for the Juvenile Diabetes Research Foundation, a disease with which she is all too familiar. After catching the flu when she was little more than 2-years-old, doctors told her parents John and Kelly that Kaitlyn had Type 1 diabetes, a condition in which the pancreas no longer produces insulin, the hormone that helps carry life-saving fuel to the body’s cells.

“My pancreas does not produce the hormone insulin, which helps regulate blood glucose (sugar) levels,” Kaitlyn calmly explained. “And since I don’t produce insulin, I have to take manmade insulin to cover for my food. So my blood sugars could go sky high or really low, and that’s all due to the flow of insulin.

“The insulin has to do with the pancreas, and the pancreas helps the liver, and it all ties into a system.”

To Kaitlyn’s list of many talents, add the title, teacher.

Kaitlyn shares a moment with Crystal Bowersox, American Idol runner-up who like Kaitlyn also has Type 1 Diabetes.

She’s also a doer. She started testing her own blood sugar when she was four and gave herself her first insulin shot in the leg at age five. “My parents always had to go to the store to buy band-aids,” she recalled. “Every time I tested myself I had to put a band aid on that finger.”

The run on band aids finally stopped on May 22, 2006. That’s the day her doctor showed her how to use an insulin pump. “I was so excited that I didn’t have to take insulin shots every day,” Kaitlyn said.

Now she shares her story with everyone within earshot – from the halls of Bonita to the halls of Congress, from which she recently returned as a member of the Juvenile Diabetes Research Foundation’s Children’s Congress, where she met with Boxer, La Verne’s David Dreier (R-CA) and other officials.

At every meeting, her goal was the same: Raise legislators’ awareness of juvenile diabetes so they’ll support more funding to find a cure.

“I want a cure because I can go through life not having to worry about what I am eating,” Kaitlyn said, sipping on a glass of sugar-free ice tea. “I can go have that extra piece of cake with my friends; I can go to the fair and participate in pie-eating contests.

“I would love to say I was a child that had juvenile diabetes. I want my body to be as healthy as can be. I won’t have to deal with the endless finger pricks and pump site changes.

“The day that cure is found will be the happiest day of my life.”

Wherever Kaitlyn goes, she’s effective. After meeting with Dreier, the Congressman agreed to join the Diabetes Caucus, which has grown to be the largest caucus in Congress. Its mission is to educate members of Congress and their staff about diabetes and to support legislative activities that would improve diabetes research, education and treatment.

Kaitlyn has fun with a young friend.

Dreier was no match against Kaitlyn’s persuasive powers. Reportedly, his meetings with constituents usually take up no more than five to 15 minutes. He met with Kaitlyn for about 45 minutes before she had to rush off to another meeting.

Kaitlyn gave her first speech when she was nine-years-old and basically hasn’t stopped talking. She has all the skills of a practiced politician.

Here in the Southland, she has addressed corporate executives at Monster, Hansen’s and Coca-Cola. She recently spoke to all three shifts at Coca Cola’s a Rancho Cucamonga, Calif., bottling plant, including workers on the 5 a.m. shift.

“With the first one, I got off to a rocky start,” Kaitlyn said. “Of course, being me, I thought I could have done a better job. I was very upset. When I went into the second one, I just blew everyone away. I’m not the person to brag, but I made the executive director of my local JDRF chapter cry.”

And she does it all without notes. “I’ve come to realize that if I have notes, that just messes me up,” Kaitlyn said.

Although Kaitlyn is taking biology this summer at Bonita, she would really like to be a public speaker and a full-time advocate for juvenile diabetes research. During her short stay in Washington D.C. one of the Children’s Congress organizers offered her an internship. She politely turned down the offer, explaining she had to first graduate from high school.

With Congressman David Dreier, Kaitlyn shares her scrapbook chronicling her life with diabetes.

Behind Kaitlyn’s mature make-up, there’s still a kid inside, albeit one who had to grow fast in the sense that she had to develop the inner discipline to cope with her disease – to repeat certain life-saving measures every day to keep herself alive.

At the Children’s Congress, she could let her hair down a bit, knowing she was there with her peers. “It was weird just being in the same room with kids that had the same thing that I had,” Kaitlyn said.

At dinner, the gathering sounded more like a convention of car or house alarm manufacturers because all the kids’ pump meters were beeping simultaneously to indicate an insulin injection was needed to cover their spikes in carbohydrates.

Kaitlyn goes on to explain how her insulin pump works. “When I inject it, there’s a meter that goes through that little tube, and then it’s pretty much like an injector. You pull it back and it’s spring-loaded and then you press the button, and then it goes and then I pull the needle out so the needle doesn’t stay in there. The only thing that stays inside my body is the tube, and that’s what connects the pump to me.”

After hearing her detailed explanation, anyone could easily mistake her for a mechanical engineer from MIT. It would make a nice fall-back option to her avowed public speaking career.

Big monuments and big dreams are ahead for Kaitlyn.

She would also make an excellent researcher. ““They have cured diabetes within mice,” Kaitlyn shared, “but the cure doesn’t react well with humans because we have a different cell structure.”

After summer school lets out, Kaitlyn will focus on helping her local chapter organize its annual fundraising walk. She and her father John and mother Kelly are on the JDRF’s organizing committee. Every year, she also hosts a “Crafts, Cookie and Lemonade Stand” in La Verne.

“I pass out flyers to the whole neighborhood and to all the schools I have attended,” Kaitlyn said. “Some of the teachers stay for the whole day just to support me and also to visit. I get all my friends involved to help and make crafts. We also make cookies, but for the past two years, we have had small bakeries donate their treats as well.

“The same goes for the lemonade; we have sugar free for the diabetics and regular for the non-diabetics. The lemonade is also donated by a small local business. The stand is open for about six hours, and later in the day, the local fire department comes and squirts us down with the fire hose, and the police department comes down the street with the lights and sirens blaring. Sometimes, they put us in handcuffs, and one time I actually was able to sit in one of the cars.”

Last year, Kaitlyn raised $1,200. Is it any wonder why she is the JDRF’s youngest board member in the nation?

Though she’s a dynamo, she’s still a kid, who’s had to overcome challenges and classroom whispers as to why she always got to leave for lunch five minutes earlier than everyone else in her class.

“When I was younger, a lot of people thought my condition was contagious,” Kaitlyn said. “I would say, ‘Do not back away from me because it is not contagious. It’s a hereditary illness. And you can’t catch it from me. I can take a drink of your drink and then you can go back and have another drink from the same cup, and you will not catch diabetes. It’s not catchable.’”

No one is backing away from her now; rather, they’re gathering closely around her to hear her speak and to learn more about how they can get involved in her crusade.

“I am so proud to be a part of JDRF,” Kaitlyn said, and I won’t quit until that cure is found!”

Loving parents John and Kelly, who have been with Kaitlyn every step of the way.