Woman who dies from Rett syndrome leaves behind a legacy of love and light
Dec 11, 2024, 8:02 PM | Updated: Dec 13, 2024, 10:00 am
SALT LAKE CITY – A Utah family is sharing their daughter’s story Wednesday, just days after she passed away.
Kemry Smith died after battling Rett syndrome, a rare genetic disorder that affects the nervous system.
Her mother, Natalie Smith, told KSL TV that her daughter was like most toddlers.
“She started out being able to walk,” Smith said.
But it wasn’t long before Smith knew something was going on with her daughter.
“There were some milestones being missed and we started to do studies and research things and weren’t finding answers,” Smith said.
Kemry was finally diagnosed with Rett syndrome when she was five.
Kemry Smith’s parents began to notice she was missing milestones. She was diagnosed with Rett syndrome at five-years-old. (Courtesy, Smith family)
“It is a regressive disorder that is extremely unfair,” Smith said. By the time Kemry was 12, she couldn’t walk anymore and would eventually lose the ability to speak. But Kemry’s limitations didn’t turn people away, they did the opposite.
“She was the most kind and caring person. She could read people’s emotions and energy and she warmed everyone,” Smith said.
Kemry Smith died Monday, Dec. 9, after battling with Rett syndrome, a rare genetic disorder that affects the nervous system. (Courtesy, Smith family)
Family, friends, neighbors, and even strangers rallied around Kemry and her family.
“When they say it takes a village, Kemry had an army,” Smith said.
Smith wanted to do our interview in Kemry’s room, decorated with lighthouses and pictures of the people Kemry loved most. She can still feel her daughter here.
“She was stronger than me every time.,” Smith said. “I would be struggling and I look at her and she would just be smiling.”
Her daughter passed away on Monday. Natalie cherishes every minute they had together.
“Her light, to me, will never go out,” she said.
