HONESDALE – Right now, 13-year-old Hannah Batzel of Honesdale, looks just like any other kid her age. She’s a chipper, slightly smart-alecky eighth grader at Wayne Highlands, who sometime likes to pick on her mom and dad, Cindy and Kenny Batzel.
But in March of 2017, things were pretty different for Hannah and her family. She had been complaining of back pain, and then one morning at school she leaned back over her seat and the pain just exploded. She went to the nurse, where she rested until lunchtime, but by then she couldn’t even walk.
After that she spent several days undergoing medical testing. The diagnostic break came when they discovered Hannah’s inflammatory markers were high, which led to additional testing including imaging studies of her entire body. It is then that they discovered Hannah had multiple bone lesions in her spine.
“I hold a tiny bit of a grudge,” Hannah said as she held her thumb and forefinger just a hair’s breadth apart, “that my parents didn’t believe me.”
But Cindy Batzel says her daughter’s illness is often mistaken for growing pains or one of an array of more common ailments. Hannah has a rare genetic bone disease called Chronic Recurrent Multifocal Osteomyelitis and it is rare . . . “one in a million”-type rare.
CRMO, as it is called, is an auto-inflammatory disease that causes Hannah’s white blood cells to attack her bones, forming painful lesions that can result in: the inability to walk or move the affected areas, swelling, fevers, chronic fatigue, arthritis, gastrointestinal diseases, psoriasis, uveitis and other inflammatory diseases. With that casual stretch over her classroom chair, Hannah had caused a compression fracture in her spine.
When the surgeons did a biopsy, they found three lesions, meaning six weeks with a PICC Line, a long-term intravenous tap, multiple oral medications, and a back brace. There was a lot of pain, and a lot of time off from school, but, she said, “My doctor did let me go for a walk in the snow one time, and let me make one snow angel.”
By May of 2017 she was mended enough to get back in the “action,” so to speak. In July of the same year she began receiving monthly infusions to help combat the disease. Come June of this year, however, she was experiencing pain again, but this time in her legs, where doctors have found additional lesions on her knee, ankle and feet.
The worst thing about CRMO for Hannah Batzel: “Nobody treats me the same. They treat me like I’m fragile and I’m not.”
The disease has no cure and had been thought to be one of childhood that the youngster might outgrow. But as the number of cases of CRMO begin to grow in adults, doctors have begun to change their thinking.
There are a lot of different ways to treat the disease and its symptoms, and her mom said Hannah’s medical team will keep working until they find the regimen that works best for her. Hannah is slated to begin a new treatment in the coming weeks that will require her family to give her weekly injections and additional oral medications to combat side effects.
To spread the word about CRMO and help doctors identify it sooner, October was named CRMO Awareness Month. Hannah Batzel and her family have been hard at work raising the profile of the disease and helping to raise money for the University Iowa Stead Family Children’s Hospital and researcher Dr. Polly Ferguson, who is helping direct Hannah’s care under Dr. Catherine Bingham at Penn State Milton S. Hershey Medical Center.
First she designed a blue T-shirt with a running skeleton, hoping to sell about 50. She sold 200, with a waiting list for more. In all, 37 members of Team Hannah participated in the 5K Walk at McDade Park in Scranton, the Wayne County Children & Youth Services department held a dress down day and a group of 10 ran the Hershey Half Marathon on Oct. 21.
Hannah and her parents say they are very grateful for the support of family, friends, co-workers, Hannah’s many doctors and specialists, the staff and faculty at Wayne Highlands Middle School, Hannah’s second family at the Honesdale Dance Studio, and even complete strangers who have learned of Hannah’s battle and offered words of encouragement and hope.
Children diagnosed with this rare disease are called warriors in the CRMO community because of the battles they face. Hannah’s parents note that in spite of those battles Hannah greets each day with a smile and a positive attitude, this attitude is reflected in the statement Hannah chose for the T-shirts she designed: “God gives his hardest battles to his greatest warriors.”