Eventually, she will need to undergo several surgeries to correct the distortion that has already affected one side of her face and nose. It has also caused quite a bit of hair loss. And she'll battle the pain of arthritis for the rest of her life...among other aliments. Fun disease, huh?
Juggling all this as an out-of-work, single mom was tough. Looking back over the last few months, I realize now that most of us can find that hidden inner-strength within ourselves. A strength we never knew we possessed until tragedy strikes a loved one. And my family has been unbelievably supportive through all of this, which has helped keep me sane. My sister-in-law, Andrea has been my rock. My mother has been my shoulder-to-cry on. Everyone else has been very kind and understanding.
Well, the first three months we practically lived at the hospital while she underwent IV steroid treatments. Now, she has to take several different medications every day and a form of chemo once a week in an effort to slow the progression of the disease, and hopefully within three to five years it will become dormant…until puberty hits, that's when it’s known to reappear with a vengeance.