After a difficult health journey, 13-year-old Lilah is thriving today thanks to expert care from Sanford Children’s in Bismarck.
Lilah’s family is sharing her story as part of the 2024 Great American Bike Race (GABR), a one-of-a-kind stationary bike race benefiting local kids served by Sanford Children’s.
As a 2024 Great American Bike Race (GABR) star, Lilah is an ambassador for all local kids who count on Sanford Children’s for life-changing, life-saving care.
Lilah’s Story
In 2020, Lilah was a bright, healthy 9-year-old girl with no prior medical issues when her life changed forever.
After what seemed like a “routine stomach bug” wouldn’t go away, Lilah’s mom, Brenda, brought her to Sanford Children’s Hospital in Bismarck hoping for answers.
After lab work and testing, Lilah was diagnosed with Hemolytic Uremic Syndrome (HUS), a rare but serious disease that can result from diarrheal illnesses. HUS affects the kidneys and the body’s blood clotting system.
Acting quickly, Lilah’s team of physicians in Bismarck recommended the family be airlifted to Sanford Children’s Hospital in Fargo to meet with a pediatric nephrologist. From there, she was eventually airlifted to Children’s in Sioux Falls to begin dialysis.
During a dialysis treatment in Sioux Falls, Lilah suffered a right frontal hemorrhagic stroke. An artery in her brain had burst, causing bleeding and swelling in the brain.
Lilah was rushed into surgery where physicians removed a piece of her skull to accommodate the swelling. She was also placed into a medically-induced coma for 21 days.
“It was touch and go,” Brenda remembers. “We were so scared, not only for her survival, but also because we didn’t know how much she would be affected by all of this. This kind of traumatic brain injury can change your whole personality. She was always sassy and creative. She was just the most easy-going, happy-go-lucky kid who took everything in stride. We wondered, ‘would she still be the same after all this?’”
Lilah was eventually eased out of her coma, at which point it was clear the stroke had completely affected her left side.
Soon after, the family began an extensive rehabilitation process at a rehab hospital in Minneapolis where Lilah had to “re-learn everything — from how to eat and drink, to how to sit up, to how to walk again,” Brenda said.
After weeks in rehab, Lilah was able to return to her family home near Moffit where she continues to receive careful monitoring and ongoing treatment from Sanford Health in Bismarck.
She still needs a brace for her left side and suffers from continued left-handed weakness due to the stroke, but she’s getting stronger every day thanks to continued occupational and physical therapy at Sanford Children’s in Bismarck.
“She loves her therapists so much. They’ve made it so great for us there,” Brenda said.
Reflecting on Lilah’s journey, Brenda says she’s grateful for the care her daughter received, and continues to receive, from Sanford Health.
“We feel very blessed with the care she had. The intensive care team in Bismarck was amazing. We got pretty attached to the nurses — they treated Lilah like she was their daughter. I truly believe that if we didn’t have that level of care, that close to home, that Lilah probably wouldn’t be here today,” she said. “We feel so lucky to have this network of care available so close to us.”
Today, Lilah is a spunky 13-year-old who loves art, building with LEGO and reading — especially the “Harry Potter” series. She loves to spend time outdoors and dreams of becoming an artist or graphic designer when she’s older.
The chance for Lilah to serve as a 2024 GABR Star is especially meaningful, Brenda said, because the event has been a lifeline for the entire family.
“GABR has helped us with buying a functional electrical stimulation device to help with Lilah’s left leg mobility. This device isn’t covered by insurance so it was wonderful to receive that support. GABR has also helped us with travel costs so Lilah could participate in a month-long intensive therapy program in Minneapolis. The support has been wonderful to help ease the financial burden.
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“We feel very blessed with the care she had. The intensive care team in Bismarck was amazing. We got pretty attached to the nurses — they treated Lilah like she was their daughter. I truly believe that if we didn’t have that level of care, that close to home, that Lilah probably wouldn’t be here today. We feel so lucky to have this network of care available so close to us.”
Lilah’s Mom
Give for Good
If you’re inspired by this story and want to join our work to further transform pediatric health care, we invite you to Give for Good today. 100% of your gift through the Sanford Health Foundation will help advance world-class pediatric care and specialty programs to help local kids get better, faster, close to home.
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