Hope for Hope: Local family gives inside look at daughter's life with Apert Syndrome

LAS VEGAS - Apert Syndrome is a rare disorder that only affects one in every 160,000 babies. 

Doctors say the condition happens when a gene mutates early in pregnancy. An Apert Syndrome diagnosis can be devastating for the child and the family.
However, one Las Vegas child named Hope is defying the Apert Syndrome odds.

A child with Apert Syndrome may have bulging, wide-set eyes, a beaked nose, fused fingers, and toes.  There isn't a cure for Apert Syndrome, but surgery can correct some of those problems.

Hope Niemiec has undergone more than a dozen surgeries, and next month, she faces her biggest one yet.

"We find out we're pregnant. We go to the 20-week ultrasound and you know it's bad when the tech leaves the room and doesn't come back," said Cheri Niemiec, Hope's mother.

Their lives changed that day.  Niemiec said she didn't know what to expect.

"We're pro-life, and we just wanted to give her a shot," said Niemiec.

Hope had webbed hands and fee, something Niemiec had never seen.

"They just, they were not right," Niemiec said. "I was crying, and I kid you not there's a voice in my head that said have Hope, and so that was her name -- Hope," Niemiec said.

For a while, her daughter's condition was a medical mystery, but then she was diagnosed with Apert Syndrome.  Surgeons stepped in," and they created fingers one by one," Niemiec said.

Hope's undergone 14 surgeries since she was a baby.  Now, at the age of 10, Hope is a fearless, kind and smart child.

She lacks social skills but understands the basics of her condition.

Apert Syndrome can also affect your eyes.

"One eye goes down; one eye goes up," Hope said.

Hope's biggest surgery will be next month.  Doctors will eventually pull Hope's face forward.  But, in the meantime, her parents love her just the way she is.

"We've had many years of Hope looking the way that she does, and we love the way that she looks," said Niemiec.

Hope says she's excited.

Reporter Shakala Alvaranga: "What do you want people to know about you Hope?"
Hope: "I'm different.
Alvaranga: "Do you like being different?"
Hope: "No."

Hope wants to look like everyone else, but she is patient, and through all of the surgeries, she has never complained.

The little girl finds solace in her family; a family that doesn't treat her any different than anyone else.

"She has blessed so many people," Niemiec said.

According to Cheri and Matthew Niemiec, having Hope was the best decision they ever made.

The Niemiec don't have any family history of Apert.  Hope says she wants to become a nurse when she grows up so that she can help people, and maybe one day find a cure to Apert Syndrome.

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