Local woman fears perception will hurt her daughter’s chance for legitimate use
By Jennifer Eisenbart
Editor
There are many things on Sally Schaeffer’s mind right now.
Most have to do with her special-needs daughter, Lydia, who has moved from crisis to crisis since being diagnosed with Kleefstra Syndrome at five months old.
Now approaching the age of 7, Lydia has the mind of a 10-to-12 month old child. She just began walking a year and a half ago.
But a new challenge has now cropped up into the life of Lydia Schaeffer – seizures. And as Sally has struggled to find out what options work best for her daughter, she had to jump feet-first into the muddy waters that are seizure medication.
As Sally explains, those medications are often given more than one at a time. A cocktail seems to work best. But after a period of time – it can be years, or months – the medication just quits working.
In the meantime, there are side effects – anything from an altered mental state to extreme drowsiness.
Schaeffer wants to pursue another option. Following a documentary aired last summer on CNN – a piece focused on the improvement of a Colorado girl who was suffering hundreds of seizures each week – she decided to push Wisconsin to legalize medical marijuana.
In the case of how it applies to seizure patients, the marijuana is so low in THC that it will not provide any kind of “high.” In fact, the plants are specifically bred to reduce THC content, and the oil – cannabidiol or CBD – is extracted and given in an oral format.
Time is tight
Schaeffer is on a tight timeline. She is pushing state legislators to take up the issue in this legislative session, which will likely end at in late March or beginning of April. If a proposed bill – there are currently two different forms working their way through the legislature, one specifically addressing the seizure-relieving oil – is not taken through a hearing and a vote by the end of that session, it will have to wait until next January.
For the Schaeffers – and the other families who are hoping to benefit from the legalization of the drug – that is too long to wait, especially considering it will likely take another year for the medication to be produced for the children in question.
“I want to save my daughter,” Sally said simply while meeting with State Sen. John Lehman on Jan. 20 at Gateway Technical College in Burlington.
Sally was there, along with another parent, Rebecca Arnold. Arnold’s daughter, Raegan, was also there, and Schaeffer would have had Lydia with her if not for a scheduled MRI.
The two girls have different issues. After being diagnosed with encephalitis at two years old, Raegan Arnold was placed in a medical coma – and came out of it having regressed to the status of a newborn.
She also developed epilepsy. After exhausting medication options, her family opted for surgery. The surgery stopped the seizures, but only for a period of less than a year.
Lydia’s challenge
For Lydia Schaeffer, the seizures happen occasionally in the daytime, but mostly as she sleeps.
“The best way to describe it in layman’s terms is she looks like she is sleeping, but her brain is seizing over 80 percent of her non-REM sleep,” Sally explained.
While Lydia has suffered numerous complications in her seven years, Sally considers this the biggest one yet.
And with Lydia already on so many medications, Sally looked into options. She found out about Charlotte Figi. After going through numerous diets and medication changes, Charlotte’s mother began using CBD on her daughter. The occurrence of seizures dropped almost immediately, and her mother, Paige, has said her daughter is down to about 2-3 seizure a month.
Sally Schaeffer has contacted Paige Figi, as well as the doctors involved in Charlotte’s treatment. It isn’t something she’s approached lightly.
“I don’t do anything haphazardly,” explained Sally. “I’ve been a huge advocate for Lydia. It’s not that I just want to legalize this drug. But if there’s this natural thing that can help our kids…it’s at least something to try.”
Sally Schaeffer stresses this is not about marijuana – as she says, she has never smoked marijuana not does she intend to. It is about pursuing an option that has worked for other children.
Encouraging results
According to the story written about Figi on CNN, the treatment has worked for other children as well. Sally Schaeffer cites cases in other parts of the country – and other states trying to legalize the use of the oil.
“This whole thing is not just for my daughter,” she said. “There’s many more in this boat.”
Lehman said Monday that he would put his support behind the two bills being circulated, and had, in fact, agreed to co-sponsor the newest bill addressing the CBD oil.
But the fact of the matter is that for all the support Lehman and others can offer, the issue must be addressed by Leah Vukmir, the chairman of the Health and Human Services Committee.
Schaeffer has said she has tried to communicate with Vukmir on numerous occasions, but cannot get a phone call in return.
Lehman said on Monday he would call Vukmir and urge her to look into the situation, but also acknowledged that committee chairmen are “all powerful” and have been known to hold up legislation.
“She’s not the only person who’s ever held up a bill,” Lehman said.
Vukmir released a statement regarding Schaeffer’s campaign last week. Quoted in an opinion piece in the Milwaukee Journal-Sentinel, Vukmir said the issue is one for the Federal Drug Administration, not individual states.
And State Assembly Speaker Robin Vos, R-Rochester, said Monday evening that while he appreciates the sense of urgency felt by Schaeffer, the legislature is in its final weeks, and “I think everybody that wants to get an idea enacted has the same sense of urgency.”
However, Vos said he had no objections.
“I would look forward to a hearing, so I understand, so all the parties involved have an opportunity to tell their story,” said Vos, who added that he would speak with Erik Severson, the chair of the Assembly Health Committee and also an ER physician in Sun Prairie.
“I’m not an expert, which is why I have to hear from the medical society,” he said.
For Schaeffer, the idea of a hearing – and a chance to help her daughter and others – cannot come soon enough. She doesn’t want to wait another year – or most likely, two, because of the response time to grow the plants for the CBD oil.
“We don’t have that time,” she said. “I don’t have that time.”
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