Mayor signs proclamation for Chiari malformation awareness month - WALB.com, South Georgia News, Weather, Sports

Mayor signs proclamation for Chiari malformation awareness month

Mayor Dorothy Hubbard and Thomas' family at the proclamation signing Mayor Dorothy Hubbard and Thomas' family at the proclamation signing
Phoebe Cooper-Wright, Thomas' Grandma Phoebe Cooper-Wright, Thomas' Grandma
Thomas Cooper Thomas Cooper
Kim Dean, Thomas' Aunt Kim Dean, Thomas' Aunt
ALBANY, GA (WALB) -

An Albany boy who lives with a rare brain disorder is helping raise awareness about it.

His family hopes more awareness will lead to better treatment and better insurance coverage. On Monday, Mayor Dorothy Hubbard signed a proclamation designating September Chiari Malformation Awareness Month.

The family has been on a long journey trying to get proper treatment, but even many doctors aren't familiar with the disease. They say treatments involve a lot of pain medication and risky surgery, which doesn't even scratch the surface of the debilitating disorder.

Six year-old Thomas Cooper isn't like other boys his age. He has trouble speaking, he can't run, and he can't attend school because part of his brain has formed below the base of his skull.

Thomas was born with a rare disorder he's been battling for years, and now the city has recognized his fight and declared September Chiari Malformation month.

All of Thomas' family members were present during the Mayor's proclamation, and were thrilled finally to be recognized. They've visited 26 doctors from Florida to New York, and have been fighting raise awareness of the disorder that affects nearly 300,000 Americans.

"At the base of your skull, there's a hole like this. The Spinal cord should come through and meet the brain With Chiari patients, the brain is going through there with such pressure that there's not room for the fluid to flow from the brain to the spine," Phoebe Cooper-Wright, Thomas' Grandma.

There's not cure for Arnold-Chiari malformation, which causes Thomas severe pain, and treatment isn't cheap. He underwent a brain decompression surgery last year, which involved a procedure through the back of his neck to alleviate pressure.

And he may have to undergo another three surgeries, which leave a zipper like scar.

"We're drained. All the savings are gone. We're living day to day. Um...credit cards out the wazoo, but what do you do," said Kim Dean, Thomas' Aunt.

The family is on the phone every day fighting for insurance coverage, but they're hoping this step will help them in the future.

The family says Thomas has been turned away from some hospitals that don't know how to treat the disorder and even the few doctors who specialize in Chiari malformation are reluctant to treat Thomas because of his young age.

Thomas's family plans to hold various events in the coming months to increase awareness of the disorder.

Copyright 2013 WALB.  All rights reserved.  

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