Lillian Overcame a Disease That Wreaked Havoc on Her Body

Patients

Lillian

Ten-year-old Lillian plays in her backyard outside Denver, Colo. Her blonde hair blows in the wind as she runs and jumps, occasionally coming over to tickle her younger brother, Logan. They chase each other around, laughing and giggling.  

It’s a scene that barely seemed possible a few years ago. Back then, Lillian and her family lived among the wheat fields of rural Kansas. At age 3, Lillian started struggling with unexplained headaches, vomiting and diarrhea. She could barely muster the energy to play.

Lillian’s parents, Miriah and Matthew, spent months making phone call after phone call, traveling hours across Kansas to find a doctor who would take Lillian’s symptoms seriously. One pediatrician blamed Lillian’s issues on “tummy troubles” while another chalked it up to Lillian being “a picky eater.”

Meanwhile, Lillian’s symptoms continued to worsen. By the time she turned 4, she had lost a fourth of her body weight. With a sunken-in face and fully distended belly, Lillian was nothing but skin and bones. The family was starting to lose hope.

“She was becoming more malnourished by the day, and we didn’t know why. Our time was running short,” Miriah said.

Desperate for Answers

That’s when the family met a physician assistant who had recently relocated to their small town in Kansas. He suggested Lillian might have Celiac Disease, a serious autoimmune disorder in which gluten damages the small intestine.

He ran a blood test to check for the antibody associated with Celiac Disease. In an average Celiac patient, the blood is typically filtered five times before the antibodies are no longer present. Lillian’s blood had to be filtered 640 times to fully remove the antibodies. It was the worst case doctors had ever seen.

Relieved that they finally had a diagnosis, Lillian’s family returned home ready to conquer Celiac Disease together. But it soon became clear that managing Lillian’s disease would take far more than cutting out breads and pasta, as their primary care doctor had advised them.

The family learned that gluten is everywhere – even hiding out in things like soaps, shampoos, and art supplies, including glue, finger-paints and PlayDoh. After countless hours of research, Lillian’s parents tried to eliminate every potential trace of gluten from their home.

Yet despite their best efforts, Lillian wasn’t improving. On her first day of preschool, she came home early, vomiting and in pain. Day after day, she kept having reactions. She was too weak to play or go to school. She wasn’t gaining weight. Lillian was wasting away.

“We didn’t understand what we were doing wrong,” Miriah said.

Finding a Support Team

Lillian’s parents realized that, in order to save Lillian’s life, they were going to need a high-level pediatric specialist. That’s when they were referred to Dr. Edward Hoffenberg, a pediatric gastroenterologist at Children’s Hospital Colorado.

The family drove five hours for their first appointment with Dr. Hoffenberg, who carefully listened to the family’s struggles. He helped the family to sort through the research on which foods were safe for Lillian to consume, and he suggested that the family replace all of their cookware to avoid the risk of cross-contamination.

“There are not enough words to describe how important his knowledge was to us,” said Miriah. “We had spent so much time questioning our every move. We knew that we would never have to do that again. We finally had a support team, and together, we could figure this out.”

Then Dr. Hoffenberg suggested that Lillian’s symptoms could be persisting because the family lived near two of the largest grain elevators in Kansas. Simply by being outside and collecting wheat dust on her hands and mouth, Lillian was accidentally ingesting gluten every single day. His words were life-changing.

The family returned to Kansas for the last time. Determined to conquer Celiac Disease once and for all, they packed up their lives, said goodbye to family and friends, and moved to Colorado.

“It was a small sacrifice to save Lillian’s life,” said Matthew.

Living Life Gluten-Free

Almost immediately after moving to Colorado, Lillian started to gain weight. The color came back in her face. She had energy for the first time in years. She wanted to play outside again.

“We are so grateful for Dr. Hoffenberg,” Miriah said. “We are privileged to call him an honorary family member.”

Today, four years after moving Colorado, Lillian’s disease is fully in remission. She hasn’t had a reaction in nearly three years. Lillian’s entire family continues their commitment to a gluten-free lifestyle, and they pack their own certified gluten-free food everywhere they go. To protect Lillian from potential contamination, they started homeschooling.

“I don’t ever want her to feel like she missed out on any opportunity because of her disease, so we go above and beyond to give her all the normal kid experiences, while still keeping her healthy,” said Miriah.

Lillian is now thriving in her online classes, and she plays the piano, ukulele and harmonica. She says she looks forward to her annual follow-up appointments with Dr. Hoffenberg. They always play a quiz game to see who knows more about the latest Celiac research.

“He’s my best friend,” Lillian said.

Having overcome so much, Lillian now hopes to inspire other kids facing similar health challenges.  She’s currently writing a book called “Cecilia the Celiac Superhero” about a little girl who bravely tackled Celiac Disease – just like Lillian did.

Donate to Lillian's fundraising page.

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