Blog shares Atlanta girl's fight against cystic fibrosis - DC News FOX 5 DC WTTG

FOX Medical Team

Blog shares Atlanta girl's fight against cystic fibrosis

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ATLANTA -

Drop in on your friend's Facebook pages and blogs and you'll probably see a lot of photos of their kids. Sutton Burnett's blog began as a way to share her story with friends and family. It's grown into something much deeper.

In almost every one of Sutton Grace Burnett's baby pictures, the Atlanta 7-month-old is smiling.

Her first baby photos were typical, but the focus abruptly changed.

Sutton's newborn screening test -- routine for all babies -- revealed that she'd inherited two genetic mutations that cause cystic fibrosis.

"We were pretty devastated," said Jeff Burnett, Sutton's father.

Jeff kept taking pictures as they got a crash course in cystic fibrosis. The disease would cause thick, sticky mucus to build up in Sutton's lungs and pancreas, making it hard for her to breathe, digest her food and grow like other babies.   

There is no cure for cystic fibrosis. The blog began as way to explain all this to family and friends.

"I don't know if you can imagine, but when something happens in your life and everybody wants to know, and you've got to tell the story so many times," said Jeff Burnett.

Sutton's blog gives readers an intensely personal look at life with cystic fibrosis: the repeated trips to the emergency room, the medications, Sutton struggling to breathe, yet still smiling underneath her tiny oxygen mask.  
          
"She's been admitted to the hospital four times since January and each time, that's the hardest time to get in there and actually talk about what's going on," said Jeff Burnett. "We're blessed to have her and sometimes it's just tough to look at those pictures and think of all the things she has to go through."

There's something about Sutton that draws reader -- some strangers -- into her world.

"A lot of them may not understand what cystic fibrosis was before, but now they have an idea, now they know what we're talking about," said Burnett.

Sutton Grace Burnett gives cystic fibrosis a face and her family a mission.

"We won't stop fighting for anything.  Maybe that's the reason for why Sutton has CF, is that we can fight that much harder for every person out there that's living with CF and just fight for the end of this and cure this for all of them," Burnett said.

About 30,000 Americans have cystic fibrosis. Many children like Sutton will live into their 30s and 40s.

For the Burnetts, that's not enough.

This weekend, "Team Sutton Grace" raised $22,000. They were part of the Great Strides Walk that raised $1.3 million for the Cystic Fibrosis Foundation to find a cure for CF.

To read Sutton Grace Burnett's blog, go to www.suttongrace.wordpress.com.  For more information about Cystic Fibrosis, go to www.cff.org.

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