Brielle’s Brigade

Please consider being a part of Brielle’s Brigade!

Alexander disease is an extremely rare (1 in 1 million births) progressive and fatal neurological disorder for which there is no known cure. Now imagine welcoming a perfectly healthy and normal baby girl into the world… and at age 2, you are told that your precious daughter, Brielle, has Alexander disease.

In 2012, two of our OCPS teachers’ lives were turned upside down. Jarrin Warren is a teacher at Avalon Middle School; she is one of the original faculty members to open the school. Her husband Derrick is also an OCPS teacher. They have two older daughters: Emry attends Avalon Middle and Channing is a Timber Creek High student.

If Brielle had not been diagnosed with this awful disease, she would be playing middle school basketball at Avalon. The life expectancy for this diagnosis is only 6 years. Now 12 years old, Brielle has doubled her life expectancy, but her last two years have been spent mostly in the hospital, receiving life-saving surgeries or medications. The disease has progressed so that she is no longer able to walk or speak, is fed through a tube, and has lost most body movement. In spite of the challenges, Brielle still recognizes her friends and family and enjoys spending time with them. She is a fighter!

The family has exhausted their financial resources and insurance only covers so much. They would like to allow Brielle to be able to stay home and receive necessary home-health-nurse care. Will you please help the Warren family to care for her by joining Brielle’s Brigade? Please click here to donate.