Meet Maggie Grappe

As a nurse in pediatric intensive care, Shonda Grappe has had to learn not to overreact. So when her daughter, Maggie, started having digestive issues as a toddler, she wasn’t particularly alarmed. “Symptoms would come and go,” she remembers. “I would be about to bring it up with her pediatrician, and then they would clear up again.” Then, as Maggie was about to enter pre-K, the frequency of the four-year-old’s bathroom visits finally led Shonda to get her checked out. Presented with Shonda’s detailed logbook and dutifully collected specimens, the pediatrician suspected irritable bowels and put her on fiber. The negative reaction it caused was a blessing in disguise says Shonda, as it triggered a painful flare up that led to Maggie to being admitted to Arkansas Children’s Hospital and given a correct diagnosis of Crohn's disease.

Almost overnight, the Grappes had gone from being believing themselves to be the parents of a healthy child with a temporary ailment to parents of a child with a chronic illness. It was enough to pierce even the tough skin of a PICU nurse who’d seen it all.

“I was initially very traumatized,” remembers Shonda. "I cried every day at least once for two months,” I was so overwhelmed with knowing that this was something she would never get rid of.”

As the Grappes adjusted to their new reality, Shonda became determined that Maggie’s condition would not have a negative influence on her character. “Taking care of sick children, I would see chronically ill kids who were allowed to misbehave because they were sick. I wanted her to be held accountable. We have never treated her any differently. We told her, "This is something you will have forever. This will not hold you back and we will learn to deal with this together.' It’s a blessing we now know what it is.”

Maggie’s own can-do attitude seems to vindicate this decision. Now 17 and a high school senior at North Little Rock High School (where she is in the top one percent of her class) she says of her condition, “It has definitely made me a stronger person, and grown me for sure. You have these obstacles that you can learn to overcome. It teaches you to face adversity and overcome the challenge.”

The family credits their first gastroenterologist at ACH, Dr. Siaw, with minimizing the chances of long term damage to Maggie’s digestive tract by taking a conservative approach to treatment. Shonda notes that Maggie was unusual in being diagnosed so young -- Crohn's is not often identified before adolescence, by which time permanent damage may have already occurred and more aggressive treatments are often the first resort. “Another physician might have gone right to IV therapy. And while we’re glad that option was there in case she needed it, I was happy for her not to have to do that.”

Another cornerstone of the Grappe’s approach to parenting a child with chronic illness has been empowering Maggie to take responsibility for her own health. “We put her in charge of taking her medicine pretty early. And rather than taking things arbitrarily out of her diet, “We’ve let her learn through experience what she can and can’t have.”

“Being proactive with my medicine, knowing my boundaries and staying on top of that definitely helps,” says Maggie. “I can’t eat everything I want to. If I am going to cheerleading practice I’m definitely not going to eat pasta with white sauce. I’ve learned what not to eat over the years, for sure.”

An athletic, devoted member of her school’s cheer team, Shonda sees her daughter serving as an encouraging example for many kids who struggle with the embarrassing aspect of having Crohn’s, ulcerative colitis, or IBD. “She’s not letting it hold her back,” she says.

Far from holding her back, Maggie says that having a chronic condition has deepened her ability to reach out and empathize with others who may have hidden challenges, a trait that will serve her well in her intended vocational path -- she hopes to follow her mom into a medical career.

“Most people who see me at school don’t know I have Crohn's. It’s not something I just go around telling people. So you never know what people have going on in their daily lives.”

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