TAMPA, Fla. — A prominent Hillsborough family is out to increase awareness for a rare genetic disorder by sharing their daughter's story, after she was diagnosed with the disorder a year and a half ago.

  • Andrew Warren is state attorney for Hillsborough County
  • Warren's daughter Lucy has Usher Syndrome
  • Only 1 percent of estimated 400,000 worldwide with disorder actually diagnosed

"This is what grounds me,” said Andrew Warren, State Attorney for Hillsborough County. “I come back after difficult days at work with very tough decisions, and I see my girls and I see my wife, and it's all about our family."

It’s a side of a person you don’t always get to see. But the Warrens want to share their 4-year-old daughter Lucy’s story, in an effort to create awareness for Usher's Syndrome, which affects both hearing and vision.

“We are focused so much on raising awareness for the disease, because with awareness that leads to research and with research, we hope to find a cure,” said Lucy’s mother, Alex Warren. 

According to the Usher Syndrome Society, an estimated 400,000 people worldwide suffer from Usher Syndrome. However, only one percent are actually diagnosed with the disorder.

Lucy Warren was born deaf, and has been wearing cochlear implants since she was a baby.  After developing other symptoms, including trouble with balance, genetic testing revealed Lucy had Usher Syndrome. 

Since then, the Warrens have started their own nonprofit organization called "Listening Matters" to help Bay area families whose children suffer hearing loss.

Saturday, Sept. 15 also marks the annual Usher Symptom Awareness Day.  For more information on the condition, visit http://www.ushersyndromesociety.org.