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Community comes together to make a sick boy's dream come true

By Shara Park | Posted - Mar. 13, 2014 at 10:42 p.m.


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PRICE, Utah — Jace Marietti has a rare condition called Cockayne Syndrome. As a result, Jace is living life in reverse. He is a 17-year-old trapped in a rapidly aging body, very much like the character in "The Curious Case of Benjamin Button."

“Jace’s syndrome is so rare that most doctors have never heard of it,” said Valorie Marietti, Jace’s mom.

Jace dreams of one day becoming a police officer, and the Utah community is coming together to make that happen. Saturday, law enforcement from around the state flood Price to make Jace's dream come true, and the whole thing will be a surprise.

“We’re going to throw him in the back of a police car and escort him up Main Street, lights and sirens, the whole show,” said Jessi Adams, who is heading up the surprise.

“I just fell in love with the kid," Adams said. "I thought he was awesome."

Adams met Jace at a blood drive for an officer and struck up a conversation with the friendly teen. She then found a page called Team Jace on Facebook, and learned of his dreams to become a police officer.

“I was like, you know, what if we could actually make his dream come true,” Adams said.

Her husband is a Carbon County Sheriff’s deputy, and starting with that connection she went to work asking every department in the state to send patches for Jace.

The patches came, and so did pins, coins and letters of encouragement. Adams then asked the Carbon County Sheriff to make Jace a real deputy.

Jace has Type-1 Cockayne Syndrome, which causes premature aging. The first signs appear at about age 1. By the time Jace was 5 he was very small, thin, and he wouldn't eat.

“When I finally found Cockayne Syndrome, up pops this picture of a little boy, naked, very thin — extremely thin — very spastic, but looked just like Jace in the face,” Valorie said.

There is no cure for Cockayne Syndrome or no magic medication. The average lifespan is 12 years. Jace is now 17. His body is closer to 90.

“He’s struggling,” Valorie said. “He’s getting where he hurts. He has aches and pains like an elderly person. He’s stiff. He’s tired.”

While Jace’s body and brain are shutting down, his spirit isn’t. Too frail to walk he rides a tricycle sharing the news he's going to be famous. If you know Jace, you know his love for life, but not everyone knows why he is rapidly aging right before their eyes.

For so many years Jace has inspired others with his kindness and his ability to love unconditionally.

“He has a gift for seeing the good in someone,” his mother said. “He has a gift of bringing out that good kind heart of people.

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Shara Park

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