Story, Patient, Research and Innovation

From Kidney Failure to Kindergarten: Belle’s Story

December 10, 2020

Belle’s autoimmune condition used to be considered a devastating – and often fatal – disease. Thanks to research breakthroughs, patients like Belle now have hope for full and healthy lives.

Belle, Children’s Hospital Colorado Patient Ambassador

Jessica still remembers the moment she knew something was wrong with her daughter, Belle. At first, she thought her toddler was fighting a run-of-the-mill virus. But then, things took a turn for the worse.

“She was so lethargic that she couldn’t eat or drink. She could barely hold her head up,” said Jessica. “I knew something wasn’t right.”

Jessica and her husband, Jovahn, rushed Belle to their local emergency room in Colorado Springs. Fearing that Belle had meningitis, doctors ordered a spinal tap. The test came back negative, but Belle’s health continued to deteriorate, and her belly began to swell – a sign that her kidneys were starting to fail.

That’s when Belle was transferred via ambulance to Children’s Hospital Colorado in Aurora, where she was admitted to the Pediatric Intensive Care Unit.

“They started hooking her up to all these machines,” recalls Jessica. “It was really scary.”

Belle was soon diagnosed with atypical hemolytic uremic syndrome (aHUS), a serious autoimmune disorder that causes blood clots to form in the kidneys. During flare-ups, the clots can restrict blood flow, causing seizures, kidney failure and even death.

Shortly after being diagnosed, Belle suffered a massive seizure. Fortunately, Children’s Colorado is home to experts on Belle’s condition, and they knew just what to do. Belle was placed in a medically induced coma to help her recover, and she was given a drug regimen to calm her immune system.

Meanwhile, Belle’s older brother, Junior, was still at home, so their parents had to split shifts between the children. Jessica and Jovahn would sometimes meet at the hospital in the middle of the night to trade off, so one parent could always be by Belle’s side.

It was an unbearably difficult time, but then, Belle slowly started to recover. On Aug 17, 2017, 30 days after arriving at Children’s Colorado, she was able to return home.

Resilient and strong

Three years later, Belle is an energetic, smart 5-year-old who loves drawing, doing crafts and playing with her big brother. She comes to Children’s Hospital Colorado’s Center for Cancer and Blood Disorders every three weeks for infusions to prevent her condition from flaring up again.

“It’s become our new normal,” says Jessica. “Belle never complains. She looks forward to eating Jell-O and building Legos at her appointments, and the nurses always come to play with her. Everyone at Children’s is amazing.”

Belle hasn’t had a major flare-up in three years, and she recently started kindergarten.

“She’s so resilient and strong,” said her mother, Jessica. “We will always be grateful to Children’s Colorado for showing our family compassion and working tirelessly to bring Belle back to good health.”

Donors fuel breakthroughs

Belle’s case is a perfect example of the life-changing power of the medical research that donors make possible.

Belle’s condition, atypical hemolytic uremic syndrome (aHUS), used to be considered a devastating – and often fatal – disease. But recent research breakthroughs have led to the development of a new drug that helps kids like Belle effectively manage their autoimmune conditions.

“It used to be that patients with aHUS would suffer significant kidney damage. They would need dialysis or a transplant,” explained Belle’s doctor, Dr. Bradley Dixon, a pediatric nephrologist at Children’s Hospital Colorado. “But even after getting a transplant, the disease would usually flare up again and again. It was often fatal.”

Yet thanks to research breakthroughs, patients like Belle now have hope for full and healthy lives.

“In recent years, researchers developed a new drug that has completely revolutionized the treatment of this disease,” said Dr. Dixon, who was involved in the initial clinical trial. “This drug stops the disease in its tracks, so patients can live normal lives.”

More recently, Children’s Colorado participated in a national clinical trial studying a longer-acting form of the aHUS drug. The hope was to enable kids like Belle to go for longer periods of time between treatments – in Belle’s case, up to three weeks. And that means spending less time at the hospital and more time just being a kid.

“This new drug was approved by the FDA in October,” said Dr. Dixon. “Because of research done here and other places, Belle doesn’t have to come to the hospital as often for infusions.”

As federal research funding continues to decline, philanthropic partners have stepped in to help. Your support helps us to continually identify promising new therapies for kids like Belle.