Girl beats odds of genetic disorder

GRABILL, Ind. (WANE) - Mallory Gross is a feisty 10 and a half-year-old. She loves to sing and play video games.

"I like to sing on the Playstation," Mallory said.

She gets As and Bs in her fourth grade class at Harlan Elementary School. She wants to be a veterinarian because she loves animals.

"[I like] especially horses, dogs, cats, and all animals. Except bad animals, like hyenas," Mallory said.

When she was 18 months old, Mallory was diagnosed with Pompe disease. It's a rare genetic disorder that stops the body from making an enzyme to break down sugar. Without that enzyme, sugar builds up in the body and that can make muscles and the heart not work.

"I just lost it when we got the diagnosis. It was devastating," Lori Gross, Mallory's mom, said.

When Mallory was 3 and a half, there was a clinical trial in Cincinnati.

"She produced a little of the enzyme, so she was eligible," Lori said.

The trial and treatment saved her life. Every other week Mallory gets an infusion of a synthetic version of the enzyme her body can't produce.

"We were so thankful for it. She helped get it approved by the FDA because her test results were so amazing," Lori said.

It takes about four hours for each treatment.

"They hook me up and the nurse plays games with me until the needle comes out," Mallory explained.

Monopoly is one of her favorites, and she usually wins.

Doctors first told Mallory's parents she would probably only live to be 7 years old. Now because of the treatments, they're telling her parents to start saving for college.

"That makes you feel pretty good," Scott Gross, Mallory's dad, said.

Some children with Pompe disease start getting the enzyme transfusions right after they're born and can walk because their treatments started so early.

Pompe disease is rare. About one in 40,000 babies is born with the disorder, according to the National Institute of Neurological Disorders and Stroke .

But, now the disease is taking the national stage at the center of the new movie, "Extraordinary Measures."

"I cried pretty much through the whole movie," Lori said.

The movie tells the story of a family with two children with Pompe disease and their struggle to find a cure.

"It was their story, and that's what made it neat. It hit home. Everything those kids went through was like, 'Mallory did that. Mallory did that,'" Lori said. "Even Scott cried a little."

Scott hopes the movie will inspire people to donate for more research for genetic disorders.

"People can see it and be more aware," he said.

Lori added the movie could help children be diagnosed more quickly. She noticed Mallory not developing normally around 4 months old, but it took 14 months for a diagnosis.

"Anyone who sees this, maybe they'll recognize symptoms and it will help diagnosis people so they can get the enzyme quicker," she said.

"Extraordinary Measures" is in theaters now.