At Brielle Burr’s 6-month mark, her parents, Ryan and Candace Burr threw her a party because medical officials had told them that she would never make it to a year old. Brielle was born with a rare disorder called Beare Stevenson syndrome that is known to cause the fusing of the skull, blockage of the nasal passages, brain growth issues, and a furrowed appearance.
There’s no cure for the disorder and the Burrs were told that Brielle would be lucky to live even several months, much less a year. Now it’s been four years since Brielle was born back in 2013 and the young girl is celebrating her fourth birthday.
“We hope to continue beating the odds,” Candace told PEOPLE magazine. “In spite of all her challenges, Brielle has shown feistiness and spirit from the very beginning. Her positive attitude helps everyone who meets her to realize that they have nothing to be negative about.”
Beare Stevenson syndrome is so rare that only 25 people worldwide have it and most infants born with it pass away within the first couple of months of life. Before Brielle was born, Candace’s ultrasound revealed that she had craniosynostosis which is a rare but correctable skull issue.
During her first three-and-a-half years, Brielle didn’t make a single sound, but she recently taught herself how to say ‘Mama’ and ‘Dada’ through her ventilator. “We feel like she understands quite well,” Candace explained. “It’s her body that limits her. Her intellect is there, which is remarkable considering the cranial pressure she has experienced on and off her entire life.”
Brielle has received frequent surgeries to take away said pressure. Despite being unable to speak, Brielle fills the Burr home with laughter and a special spirit. Her father says that even “without saying a word, she is one of the funniest people I know.”
Brielle is especially close to her older sister, Kaya, and the Burrs coordinate the girls’ Halloween costumes to match every year. “For a long time, I didn’t allow myself to think about the future,” Candace explained to PEOPLE Magazine. “But now, I’ve finally decided that’s just no way to live, so we absolutely plan the future with Brielle in it. She’s a fighter and we’re not going to give up on her.” The Burrs raise awareness in regards to their daughter’s condition on a Facebook page called ‘Brielle’s Story.’
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