Girl who inspired mom’s crusade dies

CDB oil law may be named in Lydia Schaeffer’s honor

By Jennifer Eisenbart

Editor

Sally Schaeffer is calling Friday and Saturday the “last dance” for her daughter, Lydia.

After fighting a successful battle this winter and spring to get Lydia access to cannabidiol (CBD) oil as an alternative treatment for seizures, Sally Schaeffer lost her daughter – ironically, on Mother’s Day.

Lydia had just turned 7 on April 19. Sally was out of town with her mother on an annual trip to Door County when her husband called her Sunday.

“My caregiver and my husband were both hysterically crying,” said Sally, who then called a friend. “I said, ‘just tell me if she’s alive.’

“I then called my husband back. He told me she was gone.”

Visitation for Lydia Schaeffer will be at Schuette-Daniels Funeral Home in Burlington from 4-8 p.m. Friday, with her funeral at St. Mary’s Church at 10 a.m. Saturday. Sally Schaeffer said all are welcome.

Sally had met a group of special needs mothers the night before at the bed and breakfast, and they quickly pitched in to get Sally and her mother on the road as quickly as possible. She did get home in time to say goodbye to her daughter before she was taken to the funeral home.

“We’re assuming it was in her sleep,” Sally explained. “Because she had seizures in her sleep, I’m assuming (that’s what happened).

“The day before, she was playing in the grass. My husband said she had a blast that day.”

Lydia had been fighting an uphill battle since she was born. She suffered from a rare chromosome disorder called Kleefstra Syndrome, where approximately 1 million DNA building blocks are missing from the genetic sequence.

Developmentally delayed, Lydia functioned at about the level of a 10-12 month old. Sally Schaeffer had fought for the last several years to improve her daughter’s quality of life, going head-to-head with insurance companies to gain physical therapy for Lydia that helped her learn to walk.

Most recently, Sally took her battle to the state legislature to get CBD oil – a low-THC level oil drawn from the marijuana plant – legalized as seizure medication. The drug has shown promising results for several families in Colorado, including Charlotte Figi, who now has the strain of marijuana named after her as “Charlotte’s Web.”

In spite of bringing the proposed bill to the state assembly very late in the session, compelling testimony from Sally Schaeffer and other parents convinced both the assembly and the state senate to pass the bill.

Wisconsin Gov. Scott Walker signed the bill into law April 16, and Wisconsin families were moving forward in what was expected to be a 6-to-12 month process to procure the treatment.

Now, the battle is over for Lydia. But on Monday, State Sen. Bob Wirch informed Sally Schaeffer that he was working with the governor’s office to get the law named “Lydia’s Law,” and Wirch reached out to the media on Monday as well.

“Gov. Walker’s office would like to honor Lydia and is looking to see if a proclamation is the best way to do it, or if I should introduce a resolution during the next legislative session,” Wirch said in an email. “I am certain that we will find a way to honor Lydia by naming this bill after her.”

Others reached out to the Schaeffers as well. On Facebook, Sally Schaeffer’s page was full of uplifting messages from friends and people who had watched her fight the battles for her daughter.

State Rep. Robin Vos said that he heard the news via Facebook on Sunday as well.

“I heard the tragic news yesterday,” Vos said. “My heart breaks for the Schaeffer family. Knowing the effort they put in to make sure their daughter had the best life possible, I know this can’t be easy.

“We all hope Lydia is in a better place today,” Vos added.

Sally Schaeffer said on Monday night that, short on sleep and high on stress, she was struggling to find a way to define herself, after being a “special needs mother” for so long.

“I took care of business for her,” said Sally. “I’m just taking those tasks and getting them done.”

One of those tasks involves setting up a fund to help parents pay for the CBD oil and doctors’ bills. More information will be posted at lovinglydia.com.

In spite of the grief, though, Sally knew her daughter had served as an inspiration for others – and to Sally as well.

“She was a rock star,” the mother said. “She taught me more in seven years than I think most people learn in a lifetime.”