LAKE CHALRES, LA (KPLC) – Gary brewer was never formally diagnosed, but after his death doctors discovered he had Erdheim-Chester disease. It is a rare disease where certain white blood cells attack organs in the body. First it was Gary's kidneys.
"Even though we thought the kidney transplant would bring him renewed life, he continued to become sicker and sicker," said Kathy Brewer, Gary's wife.
For three and a half years he fought the battle and lost. Seeking support and more information on the disease, Kathy found patients and family members online from all over the world suffering through the same illness.
"Every evening I have emails from people in Israel, Australia, Pakistan, England...just around the world. It does feel a little humbling to be in small rural DeRidder and be able to hopefully make a difference," said Kathy Brewer
She is now president of the Erdheim-Chester Global Alliance. The organization applied for grant funding to find more treatments for the puzzling disease. $50,000 will go to a team of researchers in Milan, Italy.
"A rare disease is defined as 1 in 200,000 people having it in the U.S. which sounds like rare diseases are extremely rare, but the interesting thing is 1 in 10 people in the U.S. will be diagnosed with a rare disease in their lifetime. Although a rare disease is rare, rare disease in general are anything but rare," explained Brewer.
High-schooler Maria Maskas was so moved by Kathy's organization, she has made it her senior project.
"It is very humbling. I feel very blessed that I am healthy," said Maskas.
Maskas is coordinating a fun run in DeRidder on March 19th. You can sign up at www.erheim-chester.org and pre-register for $20. Registration on the day of the event is $25 and all proceeds will benefit the Erheim-Chester Global Alliance.
Copyright 2011 KPLC. All rights reserved.