Story of my child being denied healthcare [View all]

Last edited Sat Dec 7, 2024, 03:03 PM - Edit history (1)

When my child was young, almost 5, started having issues with his face on his left side. It would swell up like they had a golf ball in their mouth, fever and mild discomfort. Neither our dentist or doctors at the time had any idea and neither did we.
This went on for several years. We then moved to Washington. Now 12 and getting used to a new place and it happened again. No big deal we thought. Treat the symptoms.This time we got a different response. Doctor said this is more serious than we think and sent us immediately to Seattle Children's Hospital.

The doctors there are nothing short of amazing. They immediately set to figuring out what was wrong with a host of specialists and a battery of tests.
They then admitted them to the hospital to do more tests and a biopsy of his jaw.


We now had an actual diagnosis: a rare disease called CRMO. It's a sort of autoimmune disease. It was eating away at his jawbone on their left side. Any hard contact on that side would have shattered their jaw.
We had the benefit of a doctor that was a world respected expert on the disease. We made a treatment plan. It was a long road and none of it would be fun.

Let me pause here to say that in the big picture of things we were lucky. This disease almost exclusively effects children and mostly in the long bones and spine causing bone lesions and can be incredibly painful. It comes and goes, called flair ups. Some kids can temporarily lose the ability to walk.
His was just in his jaw. Still bad but it could have been worse

We had a plan and that care plan was submitted to insurance and the claim was denied. I was dumbstruck. I was scared. What the hell are we supposed to do now?
Did I mention how amazing Seattle Children's Hospital is? Our doctor saw it was denied and started the process to have it covered by the hospital. The hospital covered 100% of our bills.
That part is great but for their kindness though my child's life would have been very difficult and painful. My health insurance company tried to ruin my child's life. I can never forgive that. Ever.
I am also cognizant of the fact we were lucky and not all families are that lucky.

So do I feel bad for that guy being killed? Hell no. I don't want to harm anybody but I'm not losing any sleep over it either.