No help for Stela, young girl with rare disorder

No help for Stela, young girl with rare disorder

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MESA, Ariz. -

A little girl, born with a rare genetic disorder. The only help her parents had came from a state agency.

But they just recently found out that help is gone. Their girl's disease is so rare it doesn't qualify.

Stela Molinar is almost 7 years old, and her mother Melissa says she's all girl.

"She loves life, she loves to dance, she's a girly girl she likes to get dressed up," says Melissa Molinar.

Stela lives in Mesa with her mom and dad, her older brother and younger sister. But Stela isn't like other kids, and she's starting to notice.

"I find that as Stela gets older, she's starting to realize, I don't know if she realizes she is different, but I know she gets very frustrated because people can't understand her, she gets frustrated because she can't run."

The Molinars knew there was something wrong after Stela was born two months premature. She needed a breathing tube, and several surgeries. Six months later they got the results from genetic testing.

"It came back with cardio facio cutaneous syndrome, extremely rare, she is one of about 250 cases in the entire world."

Stela can't speak clearly.

"She has problems with her ears, she has problems, she had surgery on her kidneys when she was younger, she had surgery on her eyes… so she just struggled, in almost everything that a normal 6-year-old should do she struggles with."

For help, the Molinars turned to the Arizona Division of Developmental Disabilities.

"She's a prime example of how these services are benefiting a child."

Doctor Bob Klaehn is the division's medical director, and he explained some of the services available to those who qualify.

"My job in terms of eligibility is to review the packets as they come in," he says. "In home speech, occupational and physical therapy, habilitation services, attendant care services."

To name just a few. The division provides health care and habilitative services for about 27,000 people statewide, and not just children.

"We are tasked with caring for children adolescents and adults with developmental disabilities in the state of Arizona," says Klaehn.

Klaehn explained that qualifying for these services is simple when the patient is under age six. But, "at age 6 things change so it tightens up."

Klaehn says the division has no choice but to follow state law, and that law, written many years ago, says it can help only people with one of the these disabilities: cerebral palsy, autism, epilepsy, and what Klaehn calls intellectual disability.

"Unfortunately those are the rules in law and that means there are a number of folks with disabilities who don't get services from us."

Including Stela. Her disorder isn't on the list.

"I've called everybody. I wrote letters to the governor I've contacted my representative because it's just ridiculous," says Melissa.

Stela has been receiving care since shortly after she was born. But a few weeks ago, the Molinars received a letter from the division notifying them that Stela would no longer qualify for services.

"I was told her coordinator was absolutely devastated, but that her hands were tied."

Not only did Stela not have one of the three genetic disorders listed by law, when she was retested for intellectual disability, what the medical community used to call mental retardation, she passed four of five categories.

"I would tell them, look at her, tell me she doesn't need help."

Melissa Molinar provided us with a signed and notarized permission form so we could ask the Division of Developmental Disabilities about her case. State law prohibits doctors from discussing patient medical issues with the media, unless it's approved by a parent or guardian. We thought this document would work. It didn't.

"I can't comment on particular cases, I am sorry," says Klaehn. "I have the state guidelines that I have to use."

Dr. Klaehn was told by his superiors not to discuss Stela's case. And Klaehn said when it came to decisions about who the department can help, his hands are tied.

"I think that she knows, she comes up to me and says nobody will play with me," says Melissa. "I feel bad for her, she's my daughter and I want what's best for her."

The Molinars are appealing the decision -- and their case will soon be heard in administrative court. But in the meantime, Stela tries her best to be like any other 6-year-old girl.

A little girl with big challenges ahead.

"This sweet sweet spirit that she brings into this home and just her personality and the way that she is, I don't know what I would do without her," says Melissa.

Stela's parents and their friends have started an organization called Stela's Rangers to help raise awareness of Stela's disorder -- and state laws that prevent her from receiving aid.

Stela's Rangers: www.facebook.com/StelasRangers

Arizona Division of Developmental Disabilities: www.azdes.gov/developmental_disabilities/

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