Mystery illness sends Niles family in search of answers
Published 9:17 am Friday, July 10, 2015
The most difficult thing for Reegan Albright is not knowing what is happening to her 12-year-old son, PJ.
Back in June, the Edwardsburg Middle School student complained of pain in his left ankle after a weekend of playing baseball.
Suspecting a sprain, he was treated at home with ice and ibuprofen, but by the next day his pain had increased to the point that that he needed to see a doctor.
After more testing, and a few more doctor visits, PJ was ultimately diagnosed with osteomyelitis — a severe bone infection that oftentimes is fast growing and dangerous if left untreated.
It was the same condition that had caused PJ to spend a week in the hospital 18 months earlier.
The Albrights were concerned.
Why was this happening to their otherwise healthy seventh-grader?
“That’s the hardest part for my husband (Philip) and I — is the not knowing why,” said Reegan, a business consultant who volunteers on the Four Flags Area Apple Festival Board of Directors. “But that is the $6 million question — why? He’s been called an enigma by two orthopedic surgeons.”
Ever since the diagnosis, PJ has been receiving treatment at Riley Children’s Hospital in Indianapolis.
Although they still don’t know what is causing the bone infections, doctors have told the Albrights that it isn’t bone cancer or leukemia.
It was welcome news.
“I think that is what people’s minds turn to when their kid keeps getting sick, so that was scary until we heard that,” Reegan said. “Anything that could be potentially fatal is scary.”
Doctors have a few theories about PJ’s condition, but the most likely one, Reegan said, is that he has an extremely rare auto-inflammatory bone disease known as chronic recurrent multifocal osteomyelitis, or CRMO.
The only way to know for certain is for doctors to do special testing, but that can’t happen until PJ has been healthy for three months.
Until then, the Albrights will have to wait and hope for the best.
“His long-term prognosis is good, so we are trying hard to stay positive,” Reegan said. “Right now all of our treatment is focused on his infection and getting him well.”
A social media fundraiser has been set up to help the Albrights with medical expenses.
Those wanting to donate can visit the website youcaring.com and search for “PJ Albright.”
The family, which lives in Niles, is also posting regular updates about PJ on the website.
“We are very grateful for everyone who has helped us and everyone who has contributed,” Reegan said. “It means a lot to us.”