UPDATE: Wisconsin law that legalizes cannabis oil for seizure treatment proves ineffective
Etched in her final resting place are the words Lydia's Law 267, a law that was meant to save Lydia Schaeffer, of Burlington.
\"It's hard now that it doesn't work and my sunshine's gone,\" said Sally Schaeffer, Lydia's mom.
The seven-year-old is gone to a better place where constant seizures don't have a debilitating affect on her life. Lydia died in her sleep on Mother's Day 2014 after battling a rare type of epilepsy.
\"I do feel like I failed her and after that,\" said Sally. \"I felt like I failed everyone else that was counting on this too.\"
She's talking about cannabis oil. It's an effective treatment option for children and adults suffering from seizure disorders. CBD oil is derived from marijuana plants, but is so low in THC, that it doesn't produce a high.
Sally helped champion the law that legalized the oil in Wisconsin. But over a year later, no one can get it.
\"It's maddening. It's upsetting,\" she said.
Under Lydia's Law, doctors and hospitals must apply for an FDA license and do a clinical trial. Physicians say they don't have the time or money for that, so they can't prescribe CBD oil. Anyone caught with it, could face criminal charges.
\"This is one of the things when you deal with legislation, you can't think of every single scenario of what's going to happen,\" said State Sen. Van Wanggaard, Racine Republican. \"Sometimes we believe we solved it and sometimes you have to go back and re-visit it.\"
State Senator Van Wanggaard is co-sponsoring a bi-partisan bill that will decriminalize CBD oil. Meanwhile, U.S. Representative Paul Ryan is working on a federal law so patients can transport it across state lines.
\"This is really devastating and terrorizing the family, so that's why it's important for us to get this done,\" added Sen. Wanggaard.
\"This isn't something that can go through legislation in a year, two years,\" said Sally. \"People don't have time.\"
People like four-year old Lily.
We introduced you to her family last month, who was selling everything they owned to move to Colorado. CBD oil is legal there and none of medications Lily has been given have worked.
\"It's just a constant struggle,\" said Vicky Pletka, Lily's mom. \"We never know when the next seizure is going to strike.\"
It's that uncertainty Sally is determined to end and her daughter's fighting spirit is pushing her to right what's wrong..
\"Selfishly I would love Lydia's Law to work, but ideally, the federal law is the best way to go with this,\" Sally added. \"It's the one that would make it legal for everyone nationwide.\"
The amendment to Lydia's Law could be formally introduced and referred to a committee as early as this week. The federal law, known as Charlotte's Web Medical Access Act of 2015, is in a sub-committee.
Meanwhile, Lily is now in Colorado Springs. Her family is grateful she can now use CBD oil for treatment.