Benton, Kansas family mourns loss of 13-year-old daughter with rare condition

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(KAKE/ABC) -

13-year old Lola Grace Hartley, who, along with her late sister, Claire, helped fight to establish a law that will allow those needing CBD oil to treat pain that was resistant to traditional medicines, passed away early Saturday morning, after courageously fighting multiple illnesses over the past several months. 

The Harltey family today posted the news on their Facebook page that Lola,  “fought with everything in her to stay.” After her sister, Claire, passed away ten months’ ago, Lola’s conditioned had deteriorated considerably. Her family believes that this was due to Lola missing her big sister. 

Claire and Lola’s Law allows patients to legally purchase CBD oil with a small amount of THC in it with a doctor’s note 15 months ahead of time saying that it is medically necessary. THC is what gives marijuana its high. The oil can not have more than 5 percent of THC in it, according to the law. Also, a third party lab must test the oil before it can be sold. Scott and Gwen Hartley advocated for the law on behalf of their daughters, and it passed in May of 2019.

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.

Details have not yet been released with regard to a celebration of Lola’s life.

The family has requested that, in lieu of flowers, memorials can be made to the Ronald McDonald House, 551 N Hillside St Suite 100, Wichita, KS 67214. They are grateful to this foundation for allowing them to stay there while Lola was in the hospital, so they could be close to her.

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