May 22, 2014

Lydia SchaefferSeven year-old Lydia Schaeffer passed away on Mother’s Day while awaiting access to the CBD oil that may have saved her life. She suffered from a rare chromosome disorder known as Kleefstra syndrome, along with epilepsy and autism. She suffered from seizures, along with other profound medical, developmental, and behavioral challenges.

Her mother, Sally Schaeffer, was a prominent advocate for the legalization of medical marijuana in Wisconsin. She said,

“I kept thinking to myself we’ve just got to buy Lydia some time, we’ve just got to buy her some time. And I guess we didn’t buy enough.”

Sally spent years fighting to legalize an edible oil known as Charlotte’s Web, which is derived from the cannabis plant. It contains little THC, the substance in marijuana that causes the “high,” but is high in cannabidiol, a substance which has been shown to cause dramatic improvements in children suffering from severe seizure disorders in Colorado. Her fight was ultimately successful, and her family was present when Gov. Scott Walker signed the bill legalizing the substance back in April. Unfortunately, demand for the oil was so high that the Schaeffer’s were told they would be unable to access it until fall.

Sally was spending Mother’s Day weekend in Door County with her own mother, while her husband, Tom, stayed home with Lydia and their two sons, Devin, 9 and Grant, 3. Most of Lydia’s seizures occurred at night, while she was asleep. Tom checked on her around midnight, and covered her with a blanket. When he checked her again the next morning, she had passed in her sleep.

lydandsallySally and Tom spent years advocating for the legalization of medical marijuana, but it came too late to save their daughter. Sally says,

data:text/mce-internal,”I think that’s what bothers me about Lydia’s death. I wanted to show people that despite all her illnesses and her odds, I was going to make it happen. Part of me feels like such a failure that I couldn’t do it for her. I couldn’t make her live.”

Sally and Tom plan to continue educating the public about the benefits of CBD oil. Sen. Robert Wirch’s office called to let them know that he intends to name the law they’d championed after Lydia. Sally has plans to start a foundation to help families pay for the oil and access to the holistic doctors who prescribe it.

For more information, or to donate, visit

Visitation is Friday from 4 to 8 pm at Schuette-Daniel’s Funeral Home in Burlington. Mass will be at 11 am Saturday at St. Mary’s Catholic Church in Burlington.

Sally’s parents thanked the many caregivers, therapists, teachers, and others who helped out during Lydia’s life. “She taught us about patience, what it’s like to be inspired, and most of all we were blessed to witness miracles that otherwise we may have been too busy to notice,” read Lydia’s obituary.

For now, the family is hopeful that other children in Wisconsin will have access to the CBD oil that may save many lives.


About the author 

Laurel Joss

Laurel Joss is a freelance writer with a Master’s Degree in Early Childhood Education. She worked as an RDI® Program Certified Consultant and has published articles in Autism Spectrum Quarterly and on her blog She is a mother to two children, one of whom is on the autism spectrum. You can also follow her on and

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