LOCAL NEWS

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.
KSL 5 TV Live

Top Stories

Local News

FILE (Mark Wetzel, KSL TV)...
Madison Swenson

Suspect outstanding after high-speed chase in Davis County

Authorities are searching for a suspect after troopers say the individual led them on a high-speed chase through Davis County and hit an officer's car.
16 hours ago
The Salt Lake County district attorney concluded Friday that the actions of officers involved in tw...
Pat Reavy, KSL.com

Utah officers’ actions in 2 police shootings were legally justified, report says

The Salt Lake County district attorney concluded Friday that the actions of officers involved in two separate 2021 police shootings in South Jordan and Salt Lake City were legally justified.
16 hours ago
...
Madison Swenson

Hundreds without power in Riverton, Bluffdale and Herriman

Rocky Mountain Power is investigating after hundreds of residents in Riverton, Bluffdale and Herriman lost power Friday afternoon.
16 hours ago
Friday snow totals...
Cary Schwanitz

Snowy conditions expected this weekend

Winter storms will keep rolling across a parched Utah through this weekend.
16 hours ago
Gov. Spencer Cox talks about his fiscal year 2024 budget recommendations at the state Capitol in Sa...
Carter Williams, KSL.com

Utah housing, water, transit and more: What’s in Cox’s record $28.4B budget proposal?

Utah Gov. Spencer Cox's proposed 2024 fiscal year budget is loaded with items that he says will help future generations.
16 hours ago
Polio vaccinations are administered in Pakistan by Rotary International in August 2022.Photo courte...
Eliza Pace

Church of Jesus Christ of Latter-day Saints donates $10 million to eradicate polio

The Church of Jesus Christ of Latter-day Saints announced a $10 million donation to help eradicate polio and neonatal tetanus in Afghanistan, Pakistan, and a select number of African countries.
16 hours ago

Sponsored Articles

notebook with password notes highlighted...
PC Laptops

How to Create Strong Passwords You Can Actually Remember

Learn how you can create strong passwords that are actually easy to remember! In a short time you can create new ones in seconds.
house with for rent sign posted...
Chase Harrington, president and COO of Entrata

Top 5 reasons you may want to consider apartment life over owning a home

There are many benefits of renting that can be overshadowed by the allure of buying a home. Here are five reasons why renting might be right for you.
Festive kitchen in Christmas decorations. Christmas dining room....
Lighting Design

6 Holiday Decor Trends to Try in 2022

We've rounded out the top 6 holiday decor trends for 2022 so you can be ahead of the game before you start shopping. 
Happy diverse college or university students are having fun on their graduation day...
BYU MBA at the Marriott School of Business

How to choose what MBA program is right for you: Take this quiz before you apply!

Wondering what MBA program is right for you? Take this quiz before you apply to see if it will help you meet your goals.
Diverse Group of Energetic Professionals Team Meeting in Modern Office: Brainstorming IT Programmer...
Les Olson

Don’t let a ransomware attack get you down | Protect your workplace today with cyber insurance

Business owners and operators should be on guard to protect their workplace. Cyber insurance can protect you from online attacks.
Hand turning a thermostat knob to increase savings by decreasing energy consumption. Composite imag...
Lighting Design

5 Lighting Tips to Save Energy and Money in Your Home

Advances in lighting technology make it easier to use smart features to cut costs. Read for tips to save energy by using different lighting strategies in your home.
Utah Man Raising Money, Awareness For Rare Carey-Fineman-Ziter Syndrome