Sally Schaeffer plays with her daughter Lydia, who suffers from life-threatening seizures, at their home in Burlington, Wis. Parents of children suffering from seizure disorders are fighting for access to marijuana, and they have changing public attitudes on their side. For the first time, a majority of Americans in opinion polls say they support the full legalization of the drug.

Feb. 23, 2014 Sally Schaeffer plays with her daughter Lydia, who suffers from life-threatening seizures, at their home in Burlington, Wis. Parents of children suffering from seizure disorders are fighting for access to marijuana, and they have changing public attitudes on their side. For the first time, a majority of Americans in opinion polls say they support the full legalization of the drug. Darren Hauck/For The Washington Post

Born with a rare chromosomal disorder, 6-year-old Lydia Schaeffer suffers from life-threatening seizures that doctors haven’t been able to control despite countless medications. In marijuana, Lydia’s family members think they might have found a treatment that works. Now, they are trying to help legalize the drug.

Born with a rare chromosomal disorder, 6-year-old Lydia Schaeffer suffered from life-threatening seizures that doctors weren’t able to control despite countless medications. Lydia’s family members were hoping to find treatment in medical marijuana.

Born with a rare chromosomal disorder, 6-year-old Lydia Schaeffer suffered from life-threatening seizures that doctors weren’t able to control despite countless medications. Lydia’s family members were hoping to find treatment in medical marijuana.

Lydia Schaeffer, the 7-year-old girl with a rare genetic disorder whose plight inspired lawmakers in Wisconsin to legalize a marijuana extract to treat her condition despite their opposition to medical marijuana, has died.

Lydia’s mother, Sally Schaeffer, had been lobbying the state legislature to legalize the drug, an experimental extract from cannabis plants known as Charlotte’s Web, for use on children with seizure disorders. The lawmakers moved to pass the law in record time and Gov. Scott Walker (R) signed the bill into law in April.

But Lydia, who died in her sleep on Mother’s Day, never got a chance to try the treatment because the law’s implementation was still being worked out.

The efforts by the Schaeffers are being replicated throughout the country — in Oklahoma, Florida, Georgia, Utah, New York and other states — by other parents who have shared their stories through Facebook, Twitter and the media.

In her obituary, her parents said Lydia taught them “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.” In a column by Jim Stingl in the Milwaukee Journal Sentinel, Lydia’s mother says she wishes she could have done more to help her daughter live.

For some families with children who suffer from rare seizure disorders, a new form of medical marijuana is proving to be a life-changing treatment. (Gabriel Silverman/The Washington Post)

But, Stingl comments, “I witnessed Sally Schaeffer in action, and I can tell you it’s not for lack of trying or the love of a mother for her child.”