GRAFTON—Sometimes it’s difficult to tell when you are around someone that is truly extraordinary. For most of the students at Taylor County Middle School and the girls involved in the various softball programs in the county, they have likely encountered such a person and never even realized it.
Eighth grader Harmonie Schroeder is one of those individuals. On the outside, she may look like any other 14-year-old girl, but inside, she is a warrior who has been fighting a devastating auto-inflammatory disorder called Chronic Recurrent Multifocal Osteomyelitis (CRMO).
CRMO causes the immune system to attack the bones causing inflammation even though there is no infection.
It was previously thought to be a very rare condition, occurring in about 0.4 out of 100,000 people per year. However, as recognition of CRMO is increasing, it appears to be more common than that. In fact, CRMO may be nearly as common as bone infections.
The average age that CRMO starts is 9 to 10 years of age, affecting girls more than boys. As to what causes CRMO to develop is somewhat of a mystery, but most doctors agree that there is a small genetic component, as some families can have more than one person with CRMO.
And while she battles with a life-altering disorder, Harmonie tries to live her life to the fullest, not letting anything stand in the way of her dreams.
She lives in Grafton with her mother Amanda Hays, her stepfather Scott Hayes and her little brother Landen Hays. She is an avid outdoor girl who loves to play softball and is getting ready to try her had at soccer this year.
She has an infectious smile, is a genuine joy to be around and is loved by anyone who encounters her. In many ways, she is your typical American teenager.
Harmonie’s journey began with a diagnosis of Ulcerative Colitis in 2016. The family had just moved from Chicago, Illinois (as she is lovingly referred to as “Chicago” by her softball team) back to their home in West Virginia when her condition began to quickly deteriorate, causing her to lose weight and become more and more lethargic, until one day she was unable to walk.
She was rushed to the WVU Children’s Hospital Emergency room where her feet had swollen to three times their normal size, and her fever spiked to 105 degrees. A bone biopsy was performed, and sess than a week later, the results came back, and she was diagnosed with CRMO.
What followed was a battery of tests that included two MRI’s, blood work and a full panel of tests to determine the severity of her newly found condition and to set a path forward to get her life back. But with all those tests came some bad news, she might not be able to walk again.
“I wouldn’t accept that I would not be able to walk again. Even when my mom told me that I would have to have physical therapy and maybe not walk again, I decided that I would get my life back and walk no matter what. I wanted to just be a normal kid. I’m an active person so it didn’t feel good just lying around.” Harmonie voiced.
Harmonie defied the odds and was up and walking a mere three days after her surgery.
“It hasn’t affected my life as much as I thought it would. At first it was really bad but now that some time has passed, I have learned to manage it, and it is a lot better” Harmonie revealed.
Harmonie’s routine has changed drastically as she now must have lab work each month, anti-rheumatic injections weekly and monthly protein blocker infusions provided by a home health nurse to track her progress and hopefully send her into remission.
It is a new routine which she takes in stride according to her mother.
“She is so strong; I am simply happy to be able to watch her play softball again. I know that she loves the sport so much, and I think that may have been a major factor for her to overcome this so she could get back to playing sports,” A. Hays commented. “But I also have a lot of anxiety when it comes to watching her play. I try not to limit her, so she can experience everything that life has to offer. I know how strong our girl is, and she will always persevere.”
When asked what she would say to any other girls in her situation, and Harmonie had these beautiful words of wisdom to impart, “You can’t let it bring you down. Don’t think about the dark parts, just use the good parts and keep going.”
For more information about CRMO or to donate to CRMO research, please visit the CRMO Foundation website at www.crmofoundation.org.