Pubdate: Thu, 15 May 2014
Source: Kenosha News (WI)
Copyright: 2014 Kenosha News
Contact:  http://www.kenoshanews.com/
Details: http://www.mapinc.org/media/2129
Note: Does not accept LTEs from outside it's county.
Author: Joe Ward
Bookmark: http://www.mapinc.org/find?271 (Cannabis - Medicinal -  Wisconsin)

FOR THE LOVE OF LYDIA

Child Who Inspired Movement for Cannabis-Based Treatment Dies in Her Sleep

Though Sally Schaeffer and her family were successful in legalizing a 
new form of treatment for seizure sufferers, the change in law did 
not come in time to help daughter Lydia Schaeffer.

The 7-year-old whose Burlington-based family became the de facto face 
of cannabidiol legislation in Wisconsin died in her sleep early Sunday morning.

Lydia's story was featured in local and national media because of 
Sally's efforts to get a new, marijuana-based seizure treatment 
legalized in Wisconsin.

In April Gov. Scott Walker signed into law the legalizing of 
cannabidiol, an marijuana-concentrated oil that has no recreational 
benefit but has been shown to decrease activity in the area of the 
brain that triggers seizures.

Lydia suffered from epilepsy, autism and a rare genetic disorder 
known as Kleefstra syndrome. Sally said Lydia likely died during a 
nighttime seizure.

The timing was extremely painful for the Schaeffers, who had recently 
been told their daughter was free of nighttime seizures. They also 
had a renewed sense of hope that the just-legalized drug would 
provide a breakthrough in Lydia's health.

"The reality of it was always that she might pass in her sleep," 
Sally said. "But you never can prepare yourself for that."

Fighting for Lydia

For some time, Lydia's condition was kept at bay by a litany of 
powerful drugs. But those drugs often robbed Lydia of her quality of 
life, Sally said.

Then she learned that some families in Colorado were finding success 
with a special marijuana strand that was low in the chemical that 
produces a high but very successful in reducing seizures.

Recreational marijuana is legal in Colorado, but Sally wanted her 
daughter to have access to the same kind of treatment here.

She and other parents of children with similar conditions lobbied in 
Madison. Her efforts were profiled in a Washington Post article, 
dubbing her the "mommy lobby."

After stalling temporarily in a Senate committee, the legislation was 
quickly passed by both chambers and signed into law.

Though her daughter was never able to try the new treatment, Sally 
said her efforts are not in vain.

"My husband and I always said if it doesn't save our child, if we 
save just one other person with that oil, then we did our job," she 
said. "It could possibly help many others. We'll never regret that."

Lydia's law

After her daughter's death, Sally began hearing from legislators who 
wanted to retroactively name the legislation after Lydia.

Sally said Walker called Tuesday to offer his condolences and to tell 
her he supported renaming the law "Lydia's Law."

Still fighting

Sally said her efforts will not end with her daughter's passing.

She said she intends to create a foundation to help families pay for 
the new treatment. And because major health-care providers have not 
signed on to prescribe the drug, Sally said parents will need help in 
paying for doctors outside of their insurance plans.

"We want to help with that," she said. "I still want to continue with 
it in the memory of Lydia."

Those interested in donating to the cause can do so at www.lovinglydia.com .
- ---
MAP posted-by: Jay Bergstrom