Utah Girl Given Less Than a Year to Live at Birth Celebrates 4th Birthday

Four-year-old Brielle Burr is a living, breathing miracle considering doctors didn't think she'd live to see her first birthday.

Brielle was born with Beare Stevenson Syndrome, a rare and life-threatening disorder that causes premature fusing of the skull bones and an abnormal face shape.   

In 2013, when Brielle was only 1 day old, doctors told her parents Ryan and Candace that she'd be lucky to live a few months.

The Burrs, who have two other children, Kaya 7, and Brooks, 6 months, share Brielle's story in several images and moving videos on their Facebook page.

They hope to raise awareness about the condition and offer support to other families struggling with the diagnosis. Most babies diagnosed with BSS die by the time they're a year old.

"We were told there was less than 20 cases ever," says Candace in one video.

"That syndrome causes health complications; breathing; she has a trach and she's on a ventilator...she's on life sustaining equipment 24 hours a day," she says in the video.

"Brielle, she means everything to our family. She has totally changed our world and we don't know what we would do without her," says dad Ryan. 

He added, "There are days we worry that we're going to lose her that day and we count our blessings everyday that she's here when we wake up."

"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," said Candace in an interview with PEOPLE.

"For a long time, I didn't allow myself to think about the future."

"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."

"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," Candace also said.

The Burrs, who are devout Christians, say their daughter is defying the odds, so much so that they recently threw her a party for her 4th birthday. 

"Let's fiesta like there's no manana," reads a post on their page."

And last Easter, the family gave thanks to God for the blessing of their daughter.

"Feeling grateful for today, for what it was, what it represents and what it means to us. Today WAS another day from the hospital and another day of making memories with our sweet Brie and the rest of our family. Today REPRESENTS the resurrection of our Savior, Jesus Christ, and the opportunity we all have to be as well.  What THAT MEANS is that life does not end in death. That #becauseofhim we get to be with our family forever, no matter how little our time here on Earth may be and what that REALLY MEANS to us is EVERYTHING!

Brielle has undergone numerous surgeries on her skull, and one surgery involved removing some granulation from her airway which has allowed her to become a lot more vocal.

She is shown speaking a few words in another video on Facebook: 

"We mentioned in a previous post that it took over 3 1/2 years before we ever heard a single noise out of Brielle.  she has now trained herself to talk around her ventilator. This is such a precious moment for our family and we are so happy to share with all of you. So proud of our little girl, she has overcome and all the new skills she works so hard to do."

God bless little Brielle and her family who despite all of their challenges, are hopeful about faith, hope and love.