Utah Man Raising Money, Awareness For Rare Carey-Fineman-Ziter Syndrome

Jul 27, 2018, 9:30 PM
MURRAY, Utah – Many people dread the arrival of their 40th birthday, but one Utah man is celebrating in a big way. He never expected to live this long. He has a very rare genetic disorder called Carey-Fineman-Ziter Syndrome, but hasn’t let that slow him down one bit.
Birthday parties are meant to be enjoyed, surrounded by friends and families.
Setting up for the ultimate birthday bash can definitely be a tall order and Historic Wheeler Farm in Murray has never had a birthday quite like this before. Then again, there aren’t many people like Cody Hanson.
“It’s something I never thought I would see honestly,” said Cody Hanson.   
Cody is just one of 11 people to ever be diagnosed with Carey-Fineman-Ziter Syndrome.
“They told me he’s not going to live and I thought oh yes he will,” Janice Hanson, Cody’s mom, said. “They even told me he will have mental issues and I thought, no he won’t.”
Cody continues to prove doctors wrong. He’s even played a big role in isolating the specific gene that causes the disorder when he traveled to Washington, D.C., to undergo hundreds of tests.
“He basically gave his body to science while he was still alive,” his mom said. “I have the pictures and everything.”
Cody is paving the way for others with the disorder.
“I just want to try and help,” he said. “I want people to have more answers.”
Friday night wasn’t just a birthday party.
“It’s also honoring my sister that passed away,” he said.

“They just had such a bond,” Cody’s mother said. “It was almost like a bond that twins would have, even with her gone, he still adores her.”

His sister, Tonya, also had the disorder. She passed away almost 20 years ago. She never made it to her 40th birthday.
“She would be dancing around and be so thrilled,” Cody’s mom said.
She would likely also be thrilled to see all the money being raised Friday went to Cody’s foundation, called Live to Inspire.
“I hope to see him live as long as I do,” Dennis Hanson, Cody’s father said.
Birthday parties are meant to be enjoyed, surrounded by friends and family, even those who have already passed on.
“I think she would be proud of what we’re doing in her honor,” Cody said.
For more information on Live to Inspire, go to www.livetoInspirefoundation.org.
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Utah Man Raising Money, Awareness For Rare Carey-Fineman-Ziter Syndrome