Her daughter died waiting for a controversial treatment. Now this Burlington mother has become the voice of parents running out of hope and out of time. The I-Team was there as she took her fight to save other children to Washington DC.
I've been following Lydia Schaeffer's story for more than a year now. She had a rare form of epilepsy and died in 2014. Now her mom continues to fight for other children who don't have access to a treatment that could have saved Lydia's life.
"I think of her all the time, and I hope she's proud," Sally Schaeffer told us with tears in her eyes.
She is living out her daughter's legacy.
"I'm confident in telling her story, and confident about what I believe in."
That confidence brought this Wisconsin mom to the nation's capitol for a grueling two day schedule packed full of meetings. From Texas to New Jersey to Georgia. She shared Lydia's story and asked lawmakers to help save other children. "Although she's not here to take care of anymore at least me doing something can help take care of others," Sally commented.
We followed Sally, and a group of mothers and grandmothers from across the country all lobbying for access to a therapeutic hemp oil known as "CBD." The oil is extracted from the marijuana plant but contains only a trace of THC, so it doesn't produce a high. It's used in some states to treat seizure disorders, but CBD is a Schedule I drug, like heroin, which makes it illegal in most states.
"The research shows it's non-toxic. You cannot die from an overdose."
One of the mom's on the DC trip was Paige Figi from Colorado. Her daughter Charlotte made national news after CBD oil saved her life.
"We were literally picking out headstones. Signing 'do not resuscitates.' I didn't have hope," Paige told us. Charlotte was seizing every 30 minutes around the clock, and nothing could stop them.
Paige had access to CBD oil in her home state because of Colorado's marijuana laws. After four years on the oil, Charlotte is thriving.
"It was shocking to see the transformation with Charlotte, shocking," Paige shared. Charlotte is now almost seizure free and off all pharmaceutical meds. People found hope in Charlotte's story, including Sally.
Her daughter's seizures happened mostly while she slept. Lydia's last treatment option was the oil, but it was illegal in Wisconsin so Sally fought to change the law and won. Governor walker signed "Lydia's Law" in April of 2014. Less than a month later, Sally lost her daughter.
Adding to that grief the law named after her daughter, isn't working. Local doctors are required to get an FDA license to prescribe the oil. An expensive and lengthy process. So Sally is now taking her fight to the federal level.
Because of stories like Sally's, Pennsylvania Congressman Scott Perry introduced legislation that will legalize CBD oil across the U.S. He and other members are now working to bring more lawmakers on board. "These kids are dependent on us. These families are depending on us," Congressman Perry stressed.
Wisconsin's Senator Ron Johnson agreed to help move the bill forward. Telling Sally and the group of parents he will help fight to educate other senators. And our state's junior Senator Tammy Baldwin is also supportive. "The advocacy of these mothers is amazing, and I think they're really enlightening a lot of my colleagues."
As the wheels of the political process continue to turn Sally reminds legislators families are running out of time, "I don't want anyone else having to be in these shoes, having to miss their child as much as I do."
Congressman Paul Ryan signed onto the bill before he became House Speaker. Having his support is huge. And his trip helped sway Wisconsin Congressman Jim Sensenbrenner. After his staff met with Sally, Sensenbrenner went from waiting on FDA trials to co-sponsoring the bill.
There might also be changes at the state level to Lydia's Law. Sally's state senator introduced a bill that would end the requirement for a prescription to possess CBD oil in Wisconsin. There's a hearing on the bill next week in Madison.