December sorrows, Christmas joy: Kaysville family learns 'life goes on'

Dec 25 2012 - 8:23am

Images

Kinzee Adams Jorgensen poses with scrapbook photos from her time in the hospital where she received a bone marrow transplant that helped to save her life after being diagnosed with a rare genetic condition. (ROBBY LLOYD/Special to the Standard-Examiner)
Kinzee Adams Jorgensen married Marshall Jorgensen last month. (ROBBY LLOYD/Special to the Standard-Examiner)
FAR LEFT: Kinzee Adams Jorgensen (right) and Lezlie Adams pose with photos of family members who have passed on. Kinzee has a rare genetic condition that her sister was also diagnosed with, but Kinzee managed to beat the odds. (ROBBY LLOYD/Special to the Standard-Examiner)
Kinzee Adams Jorgensen poses with scrapbook photos from her time in the hospital where she received a bone marrow transplant that helped to save her life after being diagnosed with a rare genetic condition. (ROBBY LLOYD/Special to the Standard-Examiner)
Kinzee Adams Jorgensen married Marshall Jorgensen last month. (ROBBY LLOYD/Special to the Standard-Examiner)
FAR LEFT: Kinzee Adams Jorgensen (right) and Lezlie Adams pose with photos of family members who have passed on. Kinzee has a rare genetic condition that her sister was also diagnosed with, but Kinzee managed to beat the odds. (ROBBY LLOYD/Special to the Standard-Examiner)

KAYSVILLE --Three Christmas trees, numerous Nativity sets and winter landscape paintings transform the Adams home into a winter wonderland.

"My mom has always tried to make it a special time and not a bad month," said Kinzee Adams Jorgensen.

Kinzee, 23, was diagnosed with metachromatic leukodystrophy at the age of 9, almost two years after her father, Rick Adams, died on Dec. 7, 1996, in an avalanche in Farmington Canyon. He would have been 54 years old today, Christmas Day.

Kinzee and her sister, Shailee Adams, were both diagnosed with the rare genetic disorder.

Both girls underwent bone marrow transplants 13 years ago, but Shailee Adams passed away on Dec. 12, 2000, at age 16, due to complications from the transplant.

Their brother, Kasey Adams, who is a firefighter for Kaysville and Farmington, and older sister, Lindzee Deru, who lives in Seattle, do not have the disorder.

"I think about (Shailee) a lot," Kinzee said, "but especially in December."

Metachromatic leukodystrophy is a genetic disorder that affects nerves, muscles, other organs, and behavior. There is no known treatment, but bone marrow transplants have been used to help those with the disorder, like Kinzee, and in her case it seems to have cured it.

Kinzee said she knows of other children who were diagnosed with the disorder, but most of them, like Shailee, have passed away.

"I'm the only survivor I know of," she said.

Medical personnel have told Kinzee she no longer has the disorder and that it should not come back, but she is a carrier and could pass it on to any children, if she has them.

When she was 9, Kinzee would not allow herself to plan for tomorrow.

"Think about today only," she would often whisper to herself.

She has learned, with her mom, Lezlie, to plan for the future.

"One of my favorite quotes is from Robert Frost, 'In three words I can sum up everything I've learned in life: life goes on,'" Kinzee said about how her attitude toward life has changed.

Lezlie Adams said she has always been protective of her children, but also tried to make the Christmas holidays good for them.

"She won't admit it, but I know the blue tree is for my dad," Kinzee said.

"Blue was his favorite color," Lezlie said.

A tree in the foyer is decorated with angels, and that tree is for Shailee. Her photographs sit on shelves between the Nativity sets and hang on the wall with photos of other family members.

Kinzee, who recently married Marshall Jorgensen, of Layton, said the radiation and chemotherapy stunted her growth, which made life "interesting" as a teenager.

"I was smaller than anyone my age, and I never looked like other girls my age," Kinzee said. "I would have panic attacks because I didn't feel normal around the other kids."

Lezlie said Kinzee always had "a smile and seemed happy, so no one knew what she was going through."

Kinzee did not date very much in high school, but did attend her senior prom, dressed in pink, sister Shailee's favorite color.

It was her friend, Sara Cottrell, who helped her come out of her shell. Both girls were team managers for the Davis High School boys' basketball team.

"She understood and helped me a lot," Kinzee said.

With encouragement from her mom and friends, Kinzee was hired at Bowman's Market when she was 15.

Most of the customers assumed she was younger than she was, even after she was promoted as a cashier.

"That was scary for me because I had to deal with people," Kinzee said.

Now Kinzee works at America First Credit Union, dealing with people on a daily basis.

"I love people," she said.

"Yes, she does," her husband, Marshall Jorgensen, said. "We can't go into Bowman's without spending an hour. She has to talk to everybody."

He said he was amazed at the number of people who showed up for their wedding reception a month ago.

"The line went out the door," Marshall said. "I think she knows all of Kaysville."

From Around the Web

  +