Jul 31, 2023, 9:03:02 PM CDT Aug 1, 2023, 1:53:47 PM CDT

Sammy’s story: Staying strong through Crohn’s disease

When Sammy was just 3, her family feared her belly pain wasn’t just a stomachache. They were right. Learn about Sammy’s journey with Crohn’s disease.

Little girl smiling while holding stuffed animals Little girl smiling while holding stuffed animals

Seven-year-old Sammy loves soccer, ballet and spending time with her best friend and big sister, Ella. She also has a whole collection of sloth stuffed animals.

"They're really cute. When I got my first sloth stuffed animal, Slothy, I decided sloths were my favorite animal," Sammy says.

One of them even doubles as a heating pad — she gives it a big hug and holds it on her belly when she experiences pain from Crohn's disease.

It's something Sammy has had to do a lot in her young life. When she was just 3, she started having stomach pain and digestive problems. At first, her pediatrician didn't think much of it. But when her mom, Amanda, noticed blood in Sammy's stool, they worried that something more serious was going on. A series of tests revealed that Sammy had Crohn's disease.

Crohn's disease is a form of inflammatory bowel disease (IBD). It's an autoimmune disease that happens when the immune system — which is supposed to attack germs like viruses and bacteria— gets confused and attacks the small intestine and colon. Scientists still don't know exactly why it starts. But once it does, it's a lifelong illness with no known cure.

Initially, I thought that if we could just find out what was wrong, we could fix it. But we learned Crohn's disease is not an easy fix," Amanda says.

Finding the right treatment for Sammy's Crohn's disease

Sammy's care team at Children's Health℠ started treatment right away. Unfortunately, there are many different treatments for Crohn's disease and no way of knowing which one will work best for each patient.

"She started one treatment after another, and each time, she'd get a little better and then worse again," Amanda says. "Her symptoms made it hard for her to go to preschool."

Little girl playing soccerFinally, more than two years after being diagnosed, the fifth medication Sammy tried started to work. Her belly pain and digestive problems lessened and her symptoms would go away for weeks and even months at a time. By the next year, she had no inflammation in her colon at all. This is a promising sign called endoscopic remission, which means the disease is under control and patients should experience fewer symptoms.

For Sammy, this means fewer days with pain and more days living like any other kid.

"When she first started playing soccer, we were quick to tell her coach that she had Crohn's disease. She might need to sit out if she has belly pain, and if she says she has to go to the bathroom, she needs to go right away," Amanda says. "Now, this spring, we debated even telling her soccer coach because she's doing so well."

Ongoing care with an expert, compassionate team

Sammy gets monthly infusion treatments where she receives medicine through a tube in her arm. Ella often accompanies her, helping Sammy relax and not feel anxious.

"I was worried the infusion treatments would be hard on her, but the nurses are amazing," Amanda says. "They know little kids, and they know how to make them feel comfortable. By Sammy's second treatment, she was jumping around in circles telling people she was here for her infusion treatment and it was a great day."

"They just put this thing on my arm so it numbs me, and I close my eyes, and we sing a song," Sammy says. "It doesn't scare me. I'm just used to it."

Sammy also has routine visits with Bhaksar Gurram, M.D., Pediatric Gastroenterologist and Associate Professor at UT Southwestern Medical Center every few months.

Little girl holding flowers"He's not only a great doctor, he really cares about who Sammy is as a person," Amanda says. "He knows she loves sloths and told her about seeing some when he visited Costa Rica. He's even shown her videos of sloths. They have this great connection and we love him for that."

The family lives with the weight that Sammy's Crohn's disease could flare up again, but their faith keeps them strong. They know God has big plans for Sammy, and her future is bright. They hope that the expert care from Dr. Gurram and his team can help Sammy enjoy sports, school and just being a kid without pain for as long as possible.

"I wish every day that Sammy didn’t have to deal with this," Amanda says. "But I know that there's a purpose for this and that I see it in Sammy. She’s been so positive, brave and resilient through all of this. We might not know that about her if not for Crohn's disease."

Learn more

The Pediatric Inflammatory Bowel Disease (IBD) Program at Children's Health is home to a team of experts who work together to help kids and teens with IBD live happy, healthy lives. Learn more about our IBD program and services.

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