Naperville 12-year-old planning 5K for Celiac research

For some running enthusiasts, planning 5Ks and other races is a full-time job.

For 12-year-old Alex Morris of Naperville, it's a bat mitzvah service project.

The Washington Junior High student is planning her own 5K race, Alex's 5K RAGE, to raise money for an organization that fights a health problem she was diagnosed with last year, Celiac disease.

The RAGE in the race's name stands for Race for Answers to Gluten Enteropathy because Celiac disease is the disorder that commonly makes people avoid gluten, a protein found in wheat.

For those affected by Celiac, gluten causes inflammation in the bowels and can even prevent absorption of nutrients and normal growth.

At 8 a.m. Sunday, June 8, Alex hopes 300 people will be RAGE-ing along the 5K course in Danada Forest Preserve near Wheaton, and RAGE-ing against the disease that has made her former favorite food off limits.

"We wanted to make more people aware of Celiac disease, so since I love running, I decided to do a 5K," said Alex, who is missing the presence of French bread in her diet.

"We want to also raise awareness because a lot of people never are diagnosed with Celiac disease and they never know they have it, and we want more people to find out about it."

Runners can register for the 5K for $30 and walkers can pay $25 to sign up for a one-mile course. All the funds raised will go to the Celiac Disease Foundation.

"They do exactly what Alex is hoping for - increase awareness, education, testing and they themselves don't do research, but they have groups of doctors that they work with and they fund research," Alex's mom, Jody Morris, said about the foundation.

Alex has volunteered for Feed My Starving Children, collected cans for ADOPT Pet Shelter in Naperville and asked friends to give birthday gifts to the animals instead of to her. So when faced with a service requirement for her Aug. 30 bat mitzvah at Congregation Beth Shalom in Naperville, Alex wanted to do something bigger, her mom said.

Alex's dad, Randy Morris, has been helping with the details of planning the race - finding a location, securing insurance, having the course certified by USA Track and Field, choosing a T-shirt vendor and ordering chip timing devices for the runners.

Alex, though, has been emailing and calling business owners like Kris Hartner of Naperville Running Company to seek sponsorships.

"For anybody to put on a race, it's a big deal," Hartner said. But for a 12-year-old, "it's pretty much unheard of."

Hartner said his daughter attends school and plays soccer with Alex, so he knew of her Celiac diagnosis and her passion for running. Sponsoring the race was something he "couldn't say no to."

"She's not messing around. She's a go-getter," Hartner said about the race organizer, who also runs track, takes ballet classes and enjoys going on walks with her dog, Hermosa. "Every time I see her I'm just amazed. I'd say she's a fairly quiet kid, but she has determination."

Alex's Celiac diagnosis came last summer after rounds of medical tests her doctor ordered because she hadn't grown in two years. At four feet, five inches tall, Alex is in the fifth percentile of weight for her age, her mom said.

"She wasn't having symptoms," Morris said. "A lot of kids … have stomachaches or vomiting or diarrhea so you know to look for a GI (gastrointestinal) cause, but with her, it was just not growing."

When testing confirmed Celiac disease, Alex's parents knew restricting gluten from her diet would eventually help her grow. She hasn't yet, though, and she said the dietary changes, specifically the loss of French bread, are "not really worth it."

"We give her the analogy that you have to fill in the hole before you build the hill," Morris said. "This is something that she's not happy about, but it's easy enough to treat with diet. … It could have been something worse."

As race day approaches, Alex is busy passing out business cards promoting the event during her track meets and encouraging everyone she knows to sign up at Alex5KRAGE.org. Then, come June 8, she'll have a pre-race plate of gluten-free pasta and get ready to run, - no, RAGE - for answers to what causes her condition.

"I think it'll feel pretty good to see everything actually happening," Alex said.

The race aims to raise $20,000 and promises to give Alex a proud accomplishment by bat mitzvah day.

"I think she has grown a lot through the project," Morris said.

If you go

What: Alex's 5K RAGE (Race for Answers to Gluten Enteropathy)

When: 8 a.m. Sunday, June 8

Where: Danada Forest Preserve near Wheaton

Who: Organized by 12-year-old Alex Morris of Naperville; proceeds benefit Celiac Disease Foundation

Cost: $30 for 5K race, $25 for 1-mile walk

Info: <a href="http://alex5krage.org/">Alex5KRAGE.org</a>