MISSOULA — You may have never heard of Gorham’s Disease, since there have only been 200 reported cases of it worldwide. But one 11-year-old Missoula girl is dealing with the rare condition that is causing her bones to deteriorate.
“When I first heard of it, my doctor explained it as a bug. Just in my bone eating it,” Addie Moser said. “And so, that’s how I’ve always explained it. Just like a little bug trapped in my bone like trying to find a way out like Pac-Man.”
Addie was first diagnosed with Gorham’s Disease in April of 2014 after an X-ray showed significant damage to the bones in her shoulder area.
Several MRI’s and other treatments had the disease in remission, until Addie’s collarbone broke about a year later. The disease became more aggressive and began to spread into to her neck and ribs. This forced doctors at Denver’s Children’s Hospital to begin radiation treatments.
Addie has gone through 22 treatments since June, but she won’t let you feel sorry for her, maintaining a very active lifestyle. “After the first, like, two weeks, it just got easier as easier,” she said. “And then it just felt like a normal day. Like going out and playing.”
After Addie’s mother died, Ryan and Michal Farley, provided Addie and her siblings a home and a family. Michal says the scariest part of this whole experience has been the unknown.
“Addie’s been amazing she’s been very strong, she’s been very positive,” Michal said. “It’s been really important that we’ve had good attitudes and that we don’t worry about things we can’t change, and that we just live every day and enjoy ourselves and when something comes up we, you so what you have to do and. Keep going.”
Addie will be starting sixth grade at Target Range School this fall, and looks forward to her reading class and hanging out with friends. But for now, she’s more than happy playing with her dog, Kona, and hanging out at the river. She says getting “down” about her condition is a waste of time.
“It’s not as bad as it seems,” Addie said. “Having radiation and going to the doctor. It’s, sometimes it’s fun. When I just, like, mope around, it just makes everything so much worse.”
Now Addie says most days she feels pretty good, and although doctors don’t have a prognosis for her long-term health, they are confident the disease can go into remission with the proper treatment.
If you would like to help Addie, an account has been set up online to help the family with medical and travel costs.AlertMe