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Girl with rare dwarfing syndrome travels to West Palm Beach for treatment


10-year-old Olivia{ }was denied treatment for her very rare disease in their hometown of Paris, France. Now more than 4,500 miles away, the Paley Orthopedic and Spine Institute in West Palm Beach is helping this little girl take steps towards a brighter future. (WPEC){p}{/p}
10-year-old Olivia was denied treatment for her very rare disease in their hometown of Paris, France. Now more than 4,500 miles away, the Paley Orthopedic and Spine Institute in West Palm Beach is helping this little girl take steps towards a brighter future. (WPEC)

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A family desperate for answers brought their little girl across the world to Palm Beach County for treatment.

She was denied treatment for her very rare disease in their hometown of Paris, France.

Now more than 4,500 miles away, the Paley Orthopedic and Spine Institute in West Palm Beach is helping this little girl take steps towards a brighter future.

CBS12’s Dani Travis got an exclusive interview with this family.

Olivia has Skeletal Dysplasia, which means she was born with a type of Dwarfing Syndrome. Doctor David Feldman, who is the associate director at the Paley Institute, has been with Olivia every step of the way since she came to West Palm Beach for treatment last September. He says while Dwarfing Syndrome is not that rare, only about a one in ten thousand case, Olivia’s case is much more unique.

"It's been like, very long and hard, and missing my family at home and friends, and my school,” said Olivia.

Ten-year-old Olivia is like most other girls. She talks, and laughs, and even paints. But this girl with a one in a million smile, has a one in a million condition. She’s just 30-pounds and has a genetic defect so rare, doctors at the Paley Institute don’t actually know which form of Dwarfism she has.

“Which leaves her obviously very incredibly small, but most importantly actually she had developed progressive paralysis over the last year or year and a half,” said Dr. Feldman.

Olivia’s Paralysis kept getting worse. She was unable to hold her urine, and move her legs or feet, ultimately leading to her unable to walk. Her school in Paris told her they were unable to handle her challenges and told her she couldn’t come back.

“Obviously as a parent, seeing your child suffering and her being 10 years old, I wanted her to have a better quality of life. Feldman was the only one who stepped in and raised his hand and said, ‘I’m going to help,’” Stephanie, Olivia’s mom, said.

Dr. Feldman began by identifying why Olivia’s conditions were deteriorating so quickly.

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“This is the X-ray before and there’s really almost no normal vertebrae (back bones),” said Feldman. “You can see in certain areas that she was very unstable and so we stabilized her with these rods and screws and put bone in between which is very hard to do for someone who weighs less than 30 pounds.”

After that, lots of work with the physical therapy team paid off with this incredible moment CBS12 News was there for. Olivia is now taking baby steps by herself with the help of personalized leg braces and a walker.

“How do you feel Olivia?” said Stephanie.

“Very good,” said Olivia.

“Are you happy to be here?” said Stephanie.

“Yes,” said Olivia.

“So, we’re extremely grateful,” said Stephanie.

A sight Stephanie says makes this long and hard journey worth every step.

“Olivia and I have been on this journey together for seven, almost eight, months. I think we’re ready to go home and say we’ve accomplished a great deal and now she’s ready to shine,” said Stephanie.

Olivia and her mother are expecting to go home to Paris next month, ending more than eight months in South Florida.

“To see her make progress and to see her happy, which she was never happy before this surgery, and to see her mother happy, and to see her family like this. She has siblings, you don’t just save the child, you save the family. They can go back on to their lives,” said Feldman.

She'll also be able to attend school again, where she'll start as a fourth grader. But something they can celebrate sooner is a trip to Disney World in Orlando this week.

If you want to donate to Olivia’s GoFundMe set up by her parents for medical expenses, click here.

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