July 15, 2019
Kendra Harms sat holding her daughter in a hospital bed at Sanford Children’s Castle of Care. Then 12 years old, Daesha Hilsenroth was finally sleeping after days of being too sick to relax, but the vision of her daughter laying in her arms was anything but comforting to Kendra.
Kendra could feel Daesha’s bones and see where her thick brown hair had started falling out. That’s when Kendra realized her little girl might not recover.
“It was that moment that it hit me,” Kendra said. “This disease could kill her.”
A painful road
A few years earlier, Daesha started suffering from painful abdominal cramps and severe diarrhea. She would run to the bathroom more than a dozen times a day.
Daesha was eventually diagnosed with Crohn’s disease, an inflammatory bowel disease resulting in painful, debilitating and sometimes life-threatening complications. Daesha’s doctors tried medications and eventually infusions to improve her condition, but nothing worked.
Despite her disease, Daesha was still Kendra’s little rockstar, going to school and continuing to practice her beloved figure skating even though she felt bad all the time.
Then in spring 2018, Daesha came down with influenza, which exasperated her Crohn’s disease. That’s when Kendra found herself holding her daughter in the hospital.
“She was completely incapacitated,” Kendra said. “At that point, we were at a loss of what to do. I just thought, ‘I have to get my daughter better.’”
The best option for Daesha was surgery to remove her large intestine and reroute her bodily waste by advancing the end of her small intestine through an incision in her stomach. Her bodily waste would then drain into a pouch worn 24 hours a day. After the rollercoaster she had been on, Kendra and her family were willing to do anything to help Daesha.
After the surgery, Daesha started to get better, gaining weight and returning to school. She learned how to manage the part of her small intestine that was now outside her body, known as an ostomy, and even nicknamed it “Bertha.” There was still an option to reverse the surgery if Daesha was healthy enough in the future.
But before long, Daesha started to get sick again, and the Crohn’s disease continued to spread. On Christmas Eve, Daesha had surgery again, this time to remove her rectum and anus. Now Daesha would need to wear Bertha for the rest of her life.
For Daesha, the surgery was so much better than the alternative — staying sick, missing school and losing precious time on the ice.
“You can see it through my clothes, which can be kind of annoying, but it’s easy to live with,” Daesha said. “It’s so much easier than being sick, running to the toilet 24/7 and having painful cramps.”
This time, Daesha got better and stayed better. Today, her growth chart is back on track, and over the past year, she’s gained 30 pounds and went up almost two shoe sizes.
“Her doctors at Sanford Children’s have always gone above and beyond the normal expected care,” Kendra said. “People asked me if we should go get more opinions. I feel confident with these people treating her. I’m not going anywhere else.”
Best of all, Daesha started figure skating again just two months after her surgery. By the end of March, she competed in the Sioux Falls ISI Ice Classic Competition and took home first place. The year before she watched the competition from her hospital bed.
“My greatest wish is that she is confident in herself no matter what and that she continues to live life to the fullest and appreciate everything that will happen to her and for her,” Kendra said. “She has shown me that no matter what you face, you can get through it.”
Daesha recently mastered the camel sit spin, but when she grows up, she dreams of becoming a nurse at Sanford Children’s, so she can help sick kids like her.
Sanford Children’s Miracle Network helped make Daesha’s success possible by providing specialized equipment and important unbilled programs like Child Life, which helped Daesha stay positive through those long hospital stays.
GABR takes place on Sept. 14 on the front lawn of Sanford Children’s Castle of Care. Here are three ways to get involved and help kids like Daesha today:
- Create a team. Visit gabr.sanfordhealth.org to start yours today.
- Become a volunteer. From registration workers to timers to setup and cleanup crews, there are plenty of options if you would like to help out at the race. Sign up today.
- Donate to your favorite rider. Find a participant and give directly to his or her team at gabr.sanfordhealth.org. All funds raised will support local kids and families.