By Jennifer Eisenbart
Editor
Sunday would have been the eighth birthday for Lydia Schaeffer.
The youngster, who died following complications from both Kleefstra Syndrome and epilepsy last May, had been – and remains – her mother’s inspiration in trying to get an alternative treatment for seizures approved.
Shortly before Lydia’s birthday last spring, Wisconsin approved what looked to be a landmark bill to allow access to cannabadiol – or CBD oil – from a specially grown strain of marijuana plant that appears to be stopping seizures in some patients.
But while the bill was signed into law, a major roadblock was added late, requiring that a Federal Drug Administration investigation license – which essentially amounts to a drug trial and involves all the federal red tape that surrounds it – had to be obtained in order to have access to the drug.
While efforts have stalled within the state to fix the law, Schaeffer and a nationwide circle of parents got a big boost last month when a number of congressmen put forth a bill that would de-schedule the strain of CBD oil that is now called “Charlotte’s Web” for the first young patient it helped.
“I’m just one piece of the pie in Wisconsin,” Schaeffer said. “However, unfortunately for me, my experience is unique, because Lydia died.”
“They need to know this can be fatal,” she added.
Schaeffer got another piece of good news earlier this week as Rep. Paul Ryan of Wisconsin agreed to co-sponsor the bill.
“It’s very huge,” Schaeffer said. “It says a large message that there is the support.”
She added in a telephone interview Tuesday that the bill appears to have bipartisan support in Washington, D.C.
She flew to D.C. at the end of last month to share Lydia’s story with several lawmakers along with other parents at the announcement of the bill. At the time, she didn’t get a chance to speak with Ryan, but did contact him by phone after the trip.
Ryan announced earlier this week that he would co-sponsor the bill. Sally Schaeffer calls it a birthday gift for her daughter.
“It was a really wonderful birthday gift,” Sally explained.
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