'She was an absolute warrior:' KS family mourns loss of 13-year-old daughter with rare condition

Published: Oct. 12, 2019 at 6:13 PM CDT
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A Kansas family is mourning the loss of their 13-year-old daughter who was born with a rare condition.

Scott and Gwen Hartley shared on their Facebook page,

, that Lola passed away early Saturday morning. The family says her body was overcome by back-to-back viruses as well as other medical complications.

"She fought with everything in her to stay. She is quite literally the strongest human being we have ever known. She could have left so many times over the course of her 13.5 years, and every single time, she chose to stay," the family said. "We are completely devastated. She was an absolute warrior till her last breath and final heartbeat. We are going to miss her so incredibly much."

The couple's oldest daughter,

died at the age of 17 in December 2018.

The sisters, born five years apart, had a neurological condition called Microcephaly. With the birth defect, a child is born with a head that is much smaller compared with babies of the same age and sex.

In May, Gov. Kelly signed Senate Bill 28,

into law. The bill allows people with life-threatening medical conditions to get CBD oil with a small amount of THC. The Hartleys lobbied for the bill because both of their daughters used CBD to help with seizures.

The Hartley family says in lieu of flowers, memorials can be made to the Ronald McDonald House, 551 N Hillside St Suite 100, Wichita, KS 67214.

Lola Grace Hartley April 28, 2006 ~ October 12, 2019 Early this morning, with a full moon shining in our PICU window,...

Posted by The Hartley Hooligans on Saturday, October 12, 2019