Lena’s battle: How Essentia is helping one young girl navigate a lifelong disease

"Fun," "nice" and "caring" are just a few ways Erin Ballance describes her 7-year-old daughter, Lena.

"She loves drawing, painting, coloring... anything creative is really fun for her," Erin said. "She's helpful with the cooking and loves playing with her siblings."

In 2020, Lena, then 5, was experiencing stomachaches, rashes and headaches. It's something Erin said happened before, but it seemed to be occurring more frequently. During a well-child visit at the Essentia Health-Lakeside Clinic, they talked with Lena's primary care doctor and explained that something more serious appeared to be going on.

"We wanted Lena to take a gluten test because my sister has a gluten intolerance,"; Erin said. "The test came back positive and showed elevated numbers. From there, we knew we were going to make some big changes."

Big changes, indeed. Celiac disease is an immune reaction to eating gluten, a protein found in wheat, barley and rye. If not managed, it can cause long-term medical complications.

Managing the disease is difficult. It requires a lot of label checking on food, things like ChapStick, toys and hygiene products. Not to mention being careful to avoid cross-contaminating household items.

"She is going to have this for her entire life and my goal became to document as much as possible and make it manageable for her going forward," Erin said.

Mom immediately started researching the disease. She learned her primary care doctor could refer Lena to Dr. Amy Garcia, a pediatric gastroenterologist at Essentia.

"Dr. Garcia is wonderful. She is very knowledgeable and explains things to Lena in a way that she can understand easily."

It's not just Dr. Garcia that Erin is pleased with; it's Lena's entire care team at Essentia. Even after having to switch primary care doctors in the middle of establishing a treatment plan, Erin said the whole process was seamless.

"Our original primary care doctor took a new position with Essentia during the pandemic," Erin explained. "But finding a new one was so easy. I used Essentia's website to find doctors who were accepting new patients, watched their bio videos and settled on Dr. Anne Skadberg, who checked a lot of boxes for what we were looking for."

Erin is thankful that the providers have been responsive, informative and helpful.

"Dr. Skadberg's team is receptive to my questions; I always get the answers I'm looking for," Erin said. "Even when they don't know the answer right away, I know they will find it."

Both Erin and her husband, Elliot, have been really impressed with the way Essentia has handled Lena's treatment, not only in the present but setting her up for future success.

"Dr. Garcia gave us a care plan, so we know what we need to do going forward," Erin said. "We know how to manage it, that we need to do blood tests annually and a bone scan every five years. It tells us everything we need to know about Lena's numbers and areas we need to be checking."

The comprehensive care makes it easier for everyone to plan for the future. Perhaps just as importantly, Erin said Dr. Garcia truly cares about Lena.

"She is so nice and really listens to Lena, which is really encouraging and empowering for her," Erin said. "Lena has worked really hard, and Dr. Garcia acknowledged that."

"Lena and her family are a true pleasure to work with," said Dr. Garcia. "Lifestyle changes are the hardest changes I have to ask of patients. It's really inspiring how they have worked so hard in the face of this lifelong diagnosis."

Erin is proud of her daughter for taking this seriously and advocating for herself at home, in school and at restaurants.

"She likes to think of it as something that makes her special and unique. For the most part, she is really positive about it and knows what's best for her, even if that means passing up a cupcake at a birthday party."

While it's a lifelong disease that Erin and Elliot are helping their child manage, the parents believe the care they are receiving now will make it much easier for Lena to navigate when she's older.