Fourteen years ago, Sabrina “Bria” Baumann’s mother, Sophia, saw a mass growing in a sonogram. Something was wrong. Whatever was growing was on her chest and her neck, and the doctors didn’t see how the fetus could survive. They encouraged Sophia to terminate the pregnancy, but she decided to give it a shot.
When Bria was born, it looked for a moment like she had a “conjoined twin.” The newborn baby actually had a 2.5 pound tumor, hanging down her body. She’s one of 200 cases in the world of CLOVES syndrome– CLOVES being the much needed acronym for congenital lipomatous overgrowth, vascular malformations, epidermal nevi and scoliosis/skeletal/spinal anomalies. The condition is caused by a genetic mutation, but isn’t passed down through families. It causes overgrown tissue and vascular problems. To learn more about this rare condition, click here.
Despite predictions, Bria is not only alive at age 14, but she’s a dancer. Her arm is stuck in the same position, bent at the elbow. The tumors, shaped like tentacles in her body press against her heart, joints, left kidney, and some tendons. They have already collapsed one lung. Her body is filled with an incredible number of fragile blood vessels, which, if ruptured, would be fatal. She’s had 38 surgeries to date, and will continue to need them as long as she lives. During one surgery, the doctors had restart her heart by hand.
Still, Bria persists. Her mother says she doesn’t really talk about her pain, but instead, choir and dance. She fights the disease by enjoying her life. The surgeons have reduced the appearance of the tumors, and Bria loves performing. She’s won beauty pageants, and danced in front of large audiences. She’s passionate, and she’s tough.
Bria isn’t the only one conquering battles with incredible strength. Her mother, Sophia, has been fighting along with her since the day the ultrasounds came back– and she’s doing it all as a single mom. Sophia is currently fundraising for Bria’s next surgery. It’s a daunting road, but together, Bria and Sophia have defied the odds every time.
