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Newest Stories:

Kylee Hunter- You Can Call Me “Smiley Kylee”

Kylee Hunter at Macchu Picchu, Peru

By Kylee Hunter

You know your life will be interesting when one of the first words out of the doctor’s mouth at your birth is, “I think that’s a bladder”. My name is Kylee Hunter, I’m almost 18, and I was born with bladder exstrophy, a rare birth defect that occurs in 1 out of 50,000 live births, where the bladder and associated structures are improperly formed. Throughout my childhood I’ve had fourteen surgeries to make my life as “normal” as possible….

The A-BE-C Great Lakes Chapter 9th Annual Summer Campout

Friday, July 14 to Sunday, July 16, 2017

The 2017 B.E.S.T. (Bladder Exstrophy Support
Team) Campout

Friday August 4 to Sunday August 6, 2017

Awards:

2016 Courage To Shine ™ – Brittney Freeman – July 9 2016

2016 Courage to Shine™ Lisha Martinez & Adam Young Award

Brittney Freeman was presented with the 2016 Courage to Shine™ Lisha Marttinez & Adam Young Award on Saturday July 9 2016.

Brittney Nichole Freeman is a 27-year-old born with classic exstrophy. Born Brittney Nichole Godfrey on August 2nd,1988, Brittney had her primary major reconstruction surgery at the Children’s Hospital of the University of Oklahoma in 2000, as a patient Dr. Bradley Kropp. He is, in her eyes, a miracle worker. She loves to proudly show off his handiwork in the form of her awesome belly button; that is also her cathing stoma. She loves that she is able to catheterize, even if it can at times be very painful. As a child she was constantly wet and wore pull ups until she met Dr. Kropp and his nurse Lori in 1999…