When Brielle Burr turned 6 months old, her parents, Ryan and Candace Burr of Taylorsville, Utah, threw her a party because everyone told them that their daughter would never live to celebrate her first birthday.
Born with Beare Stevenson syndrome, a rare disorder that causes premature fusing of the skull, blockage of the nasal passages, brain growth issues and a furrowed appearance, Brielle would be lucky to live several months, let alone a year, doctors told the Burrs in 2013, when she was only 1 day old.
Four years later, now that Brielle recently celebrated turning 4, “we hope to continue beating the odds,” Candace, 31, tells PEOPLE. “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.”
Fewer than 25 people worldwide have Beare Stevenson syndrome, with most infants dying within the first few months.
“For a long time, I didn’t allow myself to think about the future,” adds Candace, an invoice clerk with two other children, Kaya, 7, and Brooks, 6 months (neither has any health issues).
“I never bought Christmas presents too early and I didn’t plan a Halloween costume for Brielle too soon,” she says, “because it was difficult to think of her not being there for those things. 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.”
Before Brielle was born, the only problem an ultrasound revealed was craniosynostosis, a rare but correctable skull problem that causes a baby to be born with an abnormally-shaped head.
“To discover her prognosis for Bear Stevenson syndrome was devastating,” Ryan, a 33-year-old old framing contractor, tells PEOPLE. “We were overwhelmed and worried, but Brielle obviously wanted to continue to be here with us, so we fought for her and became the best advocates we could be.”
To raise awareness about Brielle’s rare condition, the Burrs post frequently on Facebook and offer their support to other families struggling with news of a rare diagnosis.
“When we first started on this journey, not a lot was known about Bear Stevenson’s,” Candace tells PEOPLE. “We couldn’t find out much about it. So it’s important for us to share what we learn along the way, while at the same time, ensuring that our daughter’s legacy will be remembered.”
Because Brielle is dependent on oxygen, a ventilator and a feeding tube, she requires constant monitoring and rarely leaves the neighborhood, where her parents take her for frequent rides in a golf cart to visit other families.
For her first three-and-a-half years, she didn’t make a single sound, says Candace, but she recently taught herself to say “mama” and “dada” through her ventilator.
“We feel like she understands quite well — it’s her body that limits her,” she says. “Her intellect is there, which is remarkable, considering the cranial pressure she has experienced on and off her entire life.”
Frequent surgeries on Brielle’s skull have been necessary to take away that pressure, “but through it all, she brings a special spirit into our home because she is full of personality and loves to make people laugh,” says Ryan. “Even without saying a word, she is one of the funniest people I know.”
Because Brielle is especially close to her older sister, Kaya, the Burrs coordinate the girls’ Halloween costumes to match every year.
“They’ve been Elsa and Anna from Frozen, Ariele and Flounder from The Little Mermaid, and the rabbit and Queen of Hearts from Alice in Wonderland, says Candace, “so we’ll have to come up with something to top those this year.
“Every day is a gift, but she’s 4 now, and we never thought we’d be here. Who’s to say we can’t double that this year?”