Family deals with Cystinosis diagnosis

When Brett and Brittney LeBeau got married in 1997, they had no idea they both carried the gene for Cystinosis, a rare disease that primarily affects children. When their daughter, Alexis, was born in 2001 and was constantly vomiting and would not eat, they had no idea what was wrong.

“Doctors were telling her she’d grow out of it or it was her personality. I just sensed there was something more going on there,” said longtime family friend, Lisa Simon, who encouraged the LeBeaus to continue to find help for Alexis. “It was obvious she wasn’t feeling right.”

It took more than two years of seeing therapists and doctors to receive the diagnosis of Cystinosis. In the meantime, Brittney became pregnant with their son, Evan, born in 2003.

“I knew right away that my son, Evan, had it,” Aurora resident Brittney LeBeau said. “There were too many similarities.”

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