Special assignment: A day with Adalia Rose

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by YVONNE NAVA / KVUE News and photojournalist ERIN COKER

kvue.com

Posted on November 1, 2013 at 8:33 AM

Updated Saturday, Nov 2 at 12:20 PM

ROUND ROCK, Texas -- With just as many Facebook fans as Willie Nelson and George Strait combined, Austin's Adalia Rose has become a celebrity in her own right.

The love and admiration people have for the brave young girl with progeria is heartwarming, so KVUE's Yvonne Nava spent a day with Adalia to learn more about her.

At just 15 pounds and 30 inches, Adalia Rose lights up the room. Like any six-year-old girl, she loves playing dress up and putting on mommy's lipstick, but behind the smiles and hugs are challenges and uncertainty.

Hair loss, vision problems and a dislocated hip are just a few of the symptoms Adalia faces as she bravely battles progeria. It’s a rare and fatal disease which causes her body to age 10 times faster than normal.

Given her condition, the family makes adjustments.

“I wish I could go and take my kids out naturally, normally, but with her it is hard because of the sun, the wind. She gets tired easily,” said Adalia's mom Natalia Amozurrutia.

For that reason, most family activities are preferably held indoors, but little brother Marcelo doesn't seem to mind as long as his sister is near. The two have a special relationship.

“It’s like, 'OK, I know my sister is different, and I need to kiss her a certain way. I need to hug her a certain way,'” said Amozurrutia. “He gently hugs her, but with other kids he'll just grab them.”

Adalia doesn't go to school because she needs constant care, so while dad's at work mom stays at home with the kids and their dog Solomon.

It has been the norm since doctors diagnosed Adalia at a young age.

“When she was two months old, we started seeing her changing. I guess it was failure to thrive,” Amozurrutia said.

Children with progeria develop severe progressive heart disease. While there is still no cure, Adalia takes medication twice a day as part of a clinical drug trial out of Boston. Her father, Ryan Pallante, says the results are encouraging.

“Internally arteries are more clear versus looking somewhat clogged before the trial, so that's good,” Pallante said.

Adalia and her family insist on focusing on the positive, often posting videos of her latest ventures on Facebook. Incredibly she's garnered the support of more than seven million people around the world.

“She is just so confident it attracts people, and people tend to look at their situation a lot lighter when they see her,” said Pallante. “I guess she has this glow that tells you, 'Yeah I am going through this, but I’m OK,'” said Amozurrutia.

This is a fight Adalia Rose plans to win. She continues to keep her spirits high and inspires others to do the same.

To learn more about the Progeria Research Foundation, go here.

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