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PHOENIX (CBS5) -
A young Arizona girl was born with a rare syndrome that requires a lot of therapy, but because she doesn't meet the state's criteria, the Department of Developmental Disabilities is taking away the services she needs.
"It's called cardiofaciocutaneous syndrome. She is one of about 200 cases in the entire world," Melissa Molinar said.
Her daughter, 6-year-old Stella Molinar, has the syndrome. It's caused by a chromosome that was not formed right. Since birth, Stella has had more than a dozen surgeries and her syndrome affects almost her entire body.
"It affects her water on the brain, affects her heart, it affects her growing, it affects her speech, it affects her tummy, it affects her ears," Melissa Molinar said.
Pretty early on, Stella began receiving speech and physical therapies. She's learned to do bear crawls and climb stairs. Although she's hard to understand, she knows exactly what is going on around her.
"I'm grateful for all of the services we have received up to this point and I just want her to continue to get all the services she deserves," Melissa Molinar said.
Stella's services are set to be cut off. According to a letter from the Department of Developmental Disabilities, her disability is not attributable to a cognitive disability, cerebral palsy, epilepsy or autism and therefore cannot continue to get the therapy she's received since birth.
"She can process things quickly and because of that, she is being penalized," said Stella's father, Rene Molinar.
"It's frustrating for me knowing that if she were to continue her services, it's going to better her quality of life down the road," Rene Molinar said.
DDD Office of Intergovernmental Relations spokeswoman Monica Higuera Coury told CBS 5 News that their denial was based on a Phoenix Children's Hospital evaluation, in which Stella's results were "a full scale IQ of 83 and a diagnosis of mild mental retardation ruled out."
Melissa and Rene Molinar have filed an appeal and have submitted reports from therapists, teachers and doctors, including the words from the doctor at Phoenix Children's Hospital.
"There were her exact words, that DDD should use her as a poster child because she really has benefited from what you see on paper from day one to now," Melissa Molinar said.
For now, it's a waiting game for the entire Molinar family, as they hope for a good outcome for their little Stella.
The state responded to the Molinars' appeal and is still terminating Stella's coverage. The Molinars have 15 days to request a hearing, which they said they plan to do.
Copyright 2013 CBS 5 (KPHO Broadcasting Corporation). All rights reserved.
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