BURLINGTON — The scene would have been hard to imagine a year ago, amid the joy of a new law to give children suffering from seizure disorders a potentially life-saving treatment.
But there Sally Schaeffer was on a beautiful, sunny morning Wednesday, laying flowers on the grave of her daughter, Lydia, just a few days before Lydia’s birthday.
Lydia died in May before she could receive the treatment, called cannabidiol, which her mother fought hard for to try to help her daughter and other children.
And despite the law that OK’d the treatment, no one else in Wisconsin has been able to legally obtain it, either.
“Absolutely not, did I think a year later I would be mourning the death of my child and that there would still be individuals out there who aren’t receiving the help that they want,” Schaeffer said.
“This is still horrific for me. My goal was to save my daughter and to help save others, and we’re still sitting in the same boat.”
Lydia would have turned 8 years old Sunday. For her family and other advocates of cannabidiol, also referred to as CBD, the fight continues.
Lydia suffered from a rare form of epilepsy that resulted in numerous seizures during her sleep. After a number of medications and other attempts to help her failed, the family found hope in the results of CBD in Colorado, where the hemp oil is legal.
CBD was previously illegal in Wisconsin because it contained a small amount of THC. However, advocates note it could never be used as recreational or medicinal marijuana, and has been shown to work for at least some children who have gained access to it.
Heavy lobbying by Schaeffer and other families helped win over skeptical lawmakers, who sent it to the governor’s desk with unanimous approval.
Less than a month after Gov. Scott Walker signed the bill into law, Lydia died in her sleep on May 11 — Mother’s Day — having never received CBD. The law was soon renamed “Lydia’s Law.”
And in the ensuing weeks, it became clear the law Schaeffer worked so tirelessly for was inadequate, due to a few key underlying factors.
It includes a provision that physicians must obtain an investigational drug permit from the federal Food and Drug Administration.
That provision, as well as a prescription requirement, made the bill politically palatable for legislators, who opposed a broader effort to legalize medical marijuana.
However, Schaeffer said Wisconsin families who want CBD have not found a physician or hospital with the resources or time to begin what is an extensive clinical trial process through the FDA.
Also problematic is that CBD can’t be made in Wisconsin due to the state’s marijuana laws and can’t be brought in from other states due to federal laws.
Schaeffer and others are working on solutions at both the state and federal levels.
State Sen. Van Wanggaard, R-Racine, expects to circulate legislation this week that would eliminate the requirement that families have a prescription for CBD.
Under the new legislation, the state would not prosecute anyone who brings the oil in from elsewhere, Wanggaard said.
He acknowledged it’s only a partial fix and doesn’t address problems with accessing CBD, adding there is still work to be done.
“This would allow those individuals to be able to have it here in Wisconsin, so if they come into possession ... they’re not going to be charged,” Wanggaard said.
Families would still technically be breaking federal law by transporting CBD across state lines, since the federal government treats CBD the same as marijuana.
Few expect federal authorities would come down on families treating children with CBD. Still, Schaeffer is also part of an effort to change federal policy.
The Charlotte’s Web Medical Access Act of 2015 would exclude CBD from the restrictions of marijuana and make it legal for families to buy the oil in one part of the country and transport it to another state.
Schaeffer was in Washington, D.C., last month for the introduction of the bill.
A few weeks later, she got a call from U.S. Rep. Paul Ryan, a Republican from Janesville, who told her he would co-sponsor the legislation.
Schaeffer called Ryan’s support a “really big win.”
“I think she has a compelling case,” Ryan said. “It’s a narrow exception that is worthy of being granted.”
At times, continuing to fight for the CBD treatment is rewarding, Schaeffer said. Other times, it’s sad, knowing she is fighting for someone no longer in the other room.
On Sunday, about 140 people were expected at the Schaeffer residence to celebrate Lydia’s birthday, as well as the completion of the family’s new Burlington home.
The family — which includes Sally’s husband, Tom, and their sons Grant, 4, and Devin, 10 — has endured more than its share of trying moments over the past year.
They are trying to help families avoid the same loss they suffered.
“We just, as a family, really feel like we want to help others,” Schaeffer said. “We don’t want others to have to plan a funeral.
“We don’t want others to have to sit here on first birthdays without her … it’s all very much surreal and yet a nightmare at the same time.”