Waite: Fulton County 8yo finds connection in a life-altering disease

This was last year, when the now-third grader couldn’t wait to wear the black dress with translucent tulle sleeves to a father-daughter dance.

But just days before the big event, Emilie got sick. A case of the flu caused her to have sepsis, and on the evening of the dance, she was in a hospital room at Albany Medical Center, rather than in a school gymnasium.

These sorts of interruptions have become commonplace for Emilie, starting when she was just 2 years old.

That’s when Emilie’s parents, Jacqueline, now 36, and Marty, now 39, noticed blood in their toddler’s stool. And the 2-year-old was filling her diaper more than a dozen times a day.

Upon seeing a picture of a diaper, Emilie’s pediatrician told the town of Johnstown family they needed to go immediately to Albany Med.

During a two-week hospital stay, with all sorts of scanning and prodding done to rule out illnesses such as cancer, Emilie was ultimately diagnosed with ulcerative colitis, an inflammatory bowel disease that causes swelling and sores in the digestive tract.

Worldwide, more than 10 million people live with ulcerative colitis or its sister IBD, Crohn’s disease. Both are autoimmune diseases, meaning they stem from an overactive immune system that attacks its own body. Approximately 60,000 young people like Emilie are diagnosed every year, according to the Crohn’s & Colitis Foundation, though cases can originate at any point in life.

Emilie, 8, and her family shared their story with me ahead of the Upstate New York Chapter of the Crohn’s & Colitis Foundation’s June 8 Take Steps fundraising walk in Loudonville, where Emilie has been selected to be the event’s pediatric honored hero. Though Emilie is a little nervous to speak in front of “a million strangers,” she’s excited to be central to an event that brings together several hundred upstate New Yorkers connected by the same diseases – diseases that are typically invisible and often misunderstood, especially as each person’s experience with Crohn’s or ulcerative colitis is unique.

Full disclosure, I know about Crohn’s firsthand, as my wife, Kathleen, was diagnosed when she was 11.

“Emilie is an outstanding child who is determined, along with her family, to raise money to find a cure for her difficult disease,” said Linda Winston, executive director of the upstate Crohn’s & Colitis Foundation chapter.

For Emilie, no matter how scary public speaking about a very personal disease may seem, she’ll be ready because she’s already dealt with so much in her eight years of life.

"It's just always a balancing act,” said mom Jacqueline, a counselor in the Greater Johnstown School District. “It's not even the [ulcerative] colitis that's a balancing act. It's everything else."

Emilie’s ulcerative colitis has been more or less under control ever since doctors diagnosed her at age two and treated her with an immunosuppressant. But the disease still creates significant hardship.

For instance, the medication, Remicade, is delivered via infusion. That means every four weeks Emilie has to miss a day of school to drive roughly an hour from her home’s wooded lot on a cul-de-sac to Albany Med so the drug can be delivered intravenously.

She now has the hospital routine down. She knows which elevator button to press, which hall to walk through. Emilie has even gotten to the point where she is brave enough to take out her own IV.

“I don’t cry anymore,” Emilie says.

Instead, she makes the best of it. Rather than harping on the hours in the hospital to get her life-saving medication that prevents sores and inflammation from flaring, she looks forward to the chicken gnocchi soup, breadsticks and pasta loaded with cheese that she always gets from Olive Garden after an infusion.

Still, living with a chronic disease like ulcerative colitis poses significant risk. Her body could develop a resistance to the medication, rendering it ineffective. And the immunosuppressant itself makes her more susceptible to serious sickness from common diseases, such as the time last year when she got sepsis due to the flu right before the father-daughter dance. As you can imagine, the pandemic was an especially fraught time.

Emilie has missed field trips and Valentine’s Day celebrations, parties and book fairs.

Yet aside from getting regular colonoscopies and limiting food such as popcorn, which can irritate her digestive tract, Emilie is a typical kid.

“It’s part of her life – it’s all she’s ever known,” said Jacqueline.

Emilie is shy with strangers, but chatty with friends. She’s a yellow belt in karate, participates in history club at school and loves art and travel.

She’s also as wise about life as she is nervous about getting sick.

“I feel like when I'm at school and doing karate and doing all the other sports, it's, like, normal,” she said. “But when I'm at home by myself, it’s, like, ‘Oh, my, God, I have ulcerative colitis."

Jacqueline said her daughter’s disease has triggered her own anxiety about germs and sickness, but it’s also helped her put things in perspective as a mom.

If Emilie wants to streak her hair with pink, what’s the big deal?

“If we didn't go through all of this, I would have been like ‘We're absolutely not doing that.’ But who cares? She's healthy," Jacqueline said.

Emilie said she wants to be a teacher when she grows up – she’s already a mature and caring big sister to her 5-year-old-brother, Max.

Then again:

“I think I want to be a doctor, too."

Or, flipping her hair and flashing a smile, Emilie wondered if maybe she could somehow emulate her idol Taylor Swift, using her upcoming speech at the Take Steps walk as a launching point.

Career ambition aside, Emilie said a primary focus right now is crafting the speech she’ll deliver at an annual event she’s been going to since she was 3.

“Sometimes this disease can make you feel lonely, but every year Take Steps helps me feel connected to others who feel the way I feel,” Emilie wrote in her online message about being an honoree. 

And funnily enough, despite all the pain and difficulty, her ulcerative colitis has been more about making connections than it has been about a life torn apart.

“She finds more people and gets to connect with them on a different level,” said Marty, a proud father anticipating his daughter’s prominent role at a big regional event.

As it happens, Emilie’s diagnosis helped Marty discover that the decades of stomach pain he dismissed was actually due to a very mild case of ulcerative colitis. And though he doesn’t need medication, Marty, who works in software sales, is now aware of his disease, monitoring it closely should it take a turn.

“It's a hidden disease,” Marty said. “It doesn't exist to people that don't know about it.”

Now that Emilie is a featured honoree, her ulcerative colitis will become quite public. Then again, most of the people in her life already know what she has had to deal with and have been as supportive toward Emilie as she’s hoping to be when she speaks at the walk.

After the family’s disappointment over missing the father-daughter dance last year, a neighbor hosted a private event about a week after Emilie recovered from the sepsis. The neighbor ordered pizza and brought in a screen to make for a fun photo background.

Just about all of Emilie’s friends came with their dads, “and they all got dressed up,” Jacqueline recalled.

Of course, Emilie wore the black outfit with fancy sleeves.