Abrielle Haynes, 10, of Sacramento, said she is described by friends and family as a "china doll" after being diagnosed with chronic recurrent multifocal osteomyelitis, also known as CRMO, nearly two years ago.
Abrielle is currently a fifth-grade student at Marie Gatton Phillips Elementary in Sacramento. She, along with her mother, Summer Haynes, had a CRMO awareness month proclaimed in Kentucky for the last two years. This year, CRMO awareness was set for October, which is also the national awareness month for the condition.
According to Dr. Yondong Zhao, who specializes in rheumatology at the Seattle's Children's Hospital and has treated Abrielle in the past, CRMO is "an inflammatory bone disease with unknown cause, which results in bone pain and bone destruction in children."
Haynes said this means that Abrielle's body will attack her healthy bones, deteriorating them and making the bones more susceptible to fractures.
Due to the rarity of the disease, there is not yet a cure nor a treatment specified for CRMO. Haynes said treatments are a case-by-case basis and can change often depending on its effectiveness in combating the symptoms of the disease.
"Not any single drug will work for every single kid … you just got to hope you finally find the one that works," Haynes said. "You're constantly having to watch and change plans."
Haynes said her daughter has changed treatments and scheduling for treatments consistently since her diagnosis. Currently, she said, Abrielle is taking double the strongest adult dosage of Humira, a shot she gets once a week. She gets infusions at the children's hospital at Vanderbilt University Medical Center in Nashville once a month, which is about an eight-hour process. Abrielle also regularly undergoes magnetic resonance imaging scans, or MRIs, to determine how well her treatments are helping her condition.
Due to the frequent change in treatments and medications, Haynes said Abrielle has become discouraged with being able to find a treatment that might help her, but that she and her therapist regularly try to push for Abrielle to use positive thinking.
"She got into the mindset of 'well nothing's going to work for me.' Humira has been helping somewhat control it, so I'm hoping they don't switch to something else," Haynes said.
According to Haynes, they have driven more than 12,000 miles for appointments at Vanderbilt, where there has only been one other case of CRMO recorded outside of Arbielle's.
"These infusions have helped. You can see her up and try to be active, but a lot of times when she tries to do like a normal kid, that slight bit of activity … she will be in bed with a heating pad for days afterward," Haynes said.
Haynes said Abrielle was diagnosed about two years ago after she complained about pain in her legs. She said at first, she thought her daughter was just going through growing pains. However, those pains soon progressed into something much more than normal growing pains and kept Abrielle from being able to walk.
After a month of Abrielle complaining of pains, Haynes said they went to the doctor for X-rays, which ended in a diagnosis of CRMO six months later after eliminating the possibility of several other conditions.
"It took maybe six more months to get diagnosed, but other kids, it can take years before they finally get to this diagnosis," Haynes said.
She said Abrielle's X-ray showed bone lesions.
"She's had I think about 22 different lesions throughout her body … from her clavicle, three spinal compression fractures … a fractured pelvis, bones in her arms, her wrist … all the way down to her feet," Haynes said.
At first, Haynes said the doctors told her that Abrielle's condition was likely bone cancer. After ruling out bone cancer, the doctors also tested for an infectious disease and even cat scratch fever.
"We had to rule out any possible thing because it's a diagnosis of exclusion," she said.
While the process for finding the right treatment plan for Abrielle has been a long and difficult one, Haynes said that there has been some progress recently.
"On her last MRI, it seemed like the current treatments were helping with healing and regrowing the bone that had been deteriorated by the disease, with the exception of parts of her spine," she said.
Haynes and Abrielle are also a part of several small support groups, both national and global. Haynes said the groups provide a small community for interaction and sharing experiences that help them cope with the condition and find hope in those who have gone into remission from the disease.
Christie Netherton, Messenger-Inquirer, 270-691-7360