CHICAGO - One mother is on a quest to have treatment for her child's very rare medical condition covered by insurance.
A bill is being introduced in Springfield this week that would help people who need treatment for a little-known auto-immune disease known as PANDAS.
It is an almost unimaginable nightmare for a parent. One day your child is healthy and acting normal; the next he or she is screaming out in pain, almost unable to communicate. It turns out in some cases it's caused by the autoimmune disease that goes by the acronym PANDAS. And once it's diagnosed, insurance companies don't cover what many doctors say is the most effective treatment.
Charlie Drury, 12, plays center on his school basketball team. He loves sports and science and lots of other normal activities for a kid his age. It's hard to imagine, but a few years ago he couldn't stand to be touched or go near water. He was nearly unable to communicate. It happened suddenly - right after he developed strep throat.
"He spent the entire day - from the minute he woke up to the minute he went to sleep - screaming in pain that his brain was on fire," said Kate Drury, his mother.
His mother had no idea at the time, but Charlie was suffering from autoimmune disease known as PANDAS, basically a severe inflammation of the brain. A local filmmaker shot this documentary featuring some patients suffering from it several years ago. It's relatively rare and often misdiagnosed.
"She actually told me to put him in an institution," his mother said.
The doctor suggested a treatment called intravenous immune globulin. It made an immediate difference and his mother says Charlie started to return to normal.
"I don't notice anything as severe as how it was, so I'm a lot better," Charlie said.
The treatment was expensive - $12,000 - and insurance covered none of it. Family members had a fundraiser to cover the costs.
Now, they are trying to save other families from going through that with a bill in the state legislature that would force insurance companies to pay for the treatment.
"We're trying to get the word out about it as well as make sure that these treatments are paid for by these insurance company," said State Rep. Deb Conroy (D-46th District).
Wendy Nawara has three children who have suffered from PANDAS.
"To get my kids treated, it was a financial nightmare," Nawara said.
Nawara started a support group for parents of children with PANDAS.
Some insurance companies have told parents they reject the treatment because they say it's experimental. The bill is up for its first reading on the floor of the House Thursday.