May 15, 2014
Tragically, Lydia Schaeffer (aged 7) passed away on Mother’s Day from a rare genetic disorder called Kleefstra syndrome, which causes terrible seizures and other complications. Her plight inspired lawmakers in Wisconsin to legalize a marijuana extract to treat her condition, despite their opposition to a broader medical marijuana reform.
Sally Schaeffer, Lydia’s mother, lobbied the state legislature to legalize the cannabidiol (CBD) extract from the marijuana stain known as Charlotte’s Web for use on children with seizure disorders. Even though lawmakers moved to pass the limited CBD-only bill in record time, determining the implications of the law stalled it from going into effect. Additionally, CBD-only bills leave behind 98% of the patients who can benefit from medical marijuana, so Wisconsin still has a long way to go before patients have legal access to this much-needed medicine.
In Lydia's honor, Sally plans to continue spreading the word on CBD oil. She said she was contacted by Sen. Robert Wirch's office this week and told they would try to have the bill she championed called Lydia's Law. Wirch’s sympathy toward the Schaeffer family is welcomed, but his and other politicians’ compassion for the vast majority of other patients in need is currently lacking.