Lydia Schaeffer
Sally Schaeffer’s daughter, Lydia, suffers from two rare seizure disorders that prevent her from sleeping, thriving and living the life of an ordinary 6-year-old girl.
Lydia’s on heavy medication that sometimes seems to do more harm than good. Schaeffer said the drug’s side effects were so debilitating that she and her husband decided to take Lydia off of them immediately.
“She’s so lethargic and tired, she is moody, she’s self-mutilating, she’s biting herself,” Schaeffer said. “She’s biting furniture. She’s biting others. She is nonverbal. She came crawling at me with tears in her eyes. My daughter does not cry. I will be honest with you. I broke down. I don’t know if she could understand me but I told her I was sorry. I said, ‘I’m so sorry, I’m trying for you, I’m trying, I’m trying to help you and I can’t and I’m sorry and I can’t fix this.’”
After speaking with a doctor and other families in the same situation, Schaeffer realized that she could fix Lydia’s seizures by changing Wisconsin’s drug laws.
As a result of pleas from Schaeffer and other families with seriously ill kids like Lydia, a bipartisan bill is being circulated in the state Legislature that would legalize cannabidiol extract oil for use as a treatment for seizure disorders.
Cannabidiol (CBD) is derived from cannabis, but it doesn’t produce a high and has been known for centuries to quell debilitating seizures in kids. It was launched into the headlines last year when Dr. Sanjay Gupta featured Charlotte Figi of Colorado Springs, Colo., in his CNN documentary “Weed.”
Like Lydia, Charlotte suffered with intense seizures while awake and while sleeping, but her parents found a strain of marijuana that produces high amounts of CBD but low tetrahydrocannabiniol (THC). That strain, called “Charlotte’s Web” in her honor, is now a magnet for families who are flocking to Colorado for a chance to use it.
But Schaeffer doesn’t want to uproot her family and move to Colorado to get Lydia on the waiting list, which now has more than 1,000 names on it. She wants to stay in Burlington, where she and her husband own their own business, are raising their three kids and have their support network and extended family. She said Lydia hasn’t tried CBD oil yet, since ingesting it in Wisconsin is a crime.
“My daughter is on three medications,” Schaeffer said. “So what makes it so wrong to try something else? Just because it has marijuana in it? It’s very frustrating to me.”
Vukmir Stifles Debate Despite GOP Support
Two bills are pending in the state Legislature that could help Lydia—the narrowly targeted CBD oil bill and a broader bill that would legalize marijuana for medical use, as 20 states have.
State Rep. Robb Kahl (D-Monona) authored the CBD oil bill after meeting with a constituent whose son, like Lydia, suffers from a seizure disorder.
“This is, in a way, a medical treatment of last resort,” Kahl said. “It’s not medical marijuana. It’s an extract. It doesn’t have any hallucinogenic properties.”
He said the bill’s narrow focus and direct impact on severely ill kids have generated bipartisan support in Wisconsin. As of this writing, 17 Democrats have signed on, including Milwaukee-area Assembly members Evan Goyke, Daniel Riemer, Christine Sinicki, JoCasta Zamarripa and Josh Zepnick. But so have three Republicans—Garey Bies of Sister Bay, David Craig of Big Bend and Scott Krug of Nekoosa—a rarity in this time of extreme political polarization.
Kahl said he holds out hope that the bill will be sent to an Assembly committee in the waning days of the session so that it can be debated soon.
“Can these kids wait another 11 months for the next session? I don’t think so. It’s unconscionable to me that we can’t debate this,” Kahl said.
Less optimistic is state Sen. John Lehman (D-Racine), one of the CBD oil bill’s three Senate sponsors, along with Mark Miller (D-Monona) and Robert Wirch (D-Kenosha).
That’s because Sen. Leah Vukmir (R-Wauwatosa), a former pediatric nurse and chair of the Senate’s health committee, has said that she refuses to allow a hearing on any marijuana-related bill. (Vukmir didn’t respond to the Shepherd’s request to comment for this article.)
“Even if it’s just for medical use she sees it as a backdoor to recreational marijuana and she slammed the door shut on the Senate side,” Lehman said. “On a practical basis, we’re just talking about something that is not going to pass.”
Lehman said he signed on to the CBD oil bill after meeting with Schaeffer, a constituent, and hearing from cancer survivors who said they found great relief from using marijuana medicinally. He’s a sponsor of the broader medical marijuana bill, and said that limited use—and not legalization of recreational marijuana—should be lawmakers’ focus.
“There are a lot of folks in Wisconsin who just want to have an unemotional discussion about marijuana, especially medical marijuana,” Lehman said. “I’m all in favor of that. I think that it is time in our history where we can talk about it without getting all excited one way or another, where we can have nice, fair, science-based testimony so we know what we are doing.”
‘No Other Possibilities’
Despite opposition from Vukmir and some Republican legislators, medical marijuana is very popular with voters. Wisconsin polls have routinely shown that legalizing medical marijuana is supported by roughly 80% of the public, an issue of unprecedented agreement. A recent Marquette University poll found that 49.7% support full legalization of marijuana—just as Colorado has—while 44.9% oppose it.
While the public has come around to the possibility of relaxing marijuana laws, state Republicans have not. The GOP-dominated Legislature is backing a measure that would allow municipalities to prosecute marijuana possession cases that were dropped by prosecutors for being too minor to bother with.
Schaeffer is asking supporters to contact their legislators to get them to act on the CBD oil bill now, to ease the suffering of kids like Lydia.
“There are innocent families and children who are sitting here with no other possibilities,” Schaeffer said. “They are withholding this medication from children.”
