By C. Jayden Smith
After struggling for years to find a solution to reduce their daughter’s epileptic seizures, the Boylan family is working to fund a clinical study that would inform whether Lion’s Mane and Reishi mushrooms are a viable supplement.
Sarah-Kate Boylan, along with her husband, Todd Boylan, of Capistrano Beach launched Lily’s Lighthouse this past May to help other families and people living with epilepsy find their own alternative solution.
More than eight years of research, along with trial and error, led the Boylans to non-psychedelic medicinal mushrooms that have given their 8-year-old daughter, Lily, significant seizure control.
At 5 weeks old, Lily was diagnosed with intractable epilepsy. Treatment couldn’t completely control her seizures.
“Everything we tried to do really didn’t work for her,” Sarah-Kate told San Clemente Times.
The family tried various medicines, CBD, and other methods to limit the multiple seizures Lily suffered each day, sometimes as many as 50. She further explained that the affliction delayed Lily’s ability to develop, speak, and use her body.
The Boylans, which included Lily’s two younger siblings, were crushed and devastated by the situation that had struck a family without a history of epilepsy, according to Sarah-Kate.
The family would later find success with Lion’s Mane and Reishi mushrooms—which have been linked to improving brain function, reducing anxiety and depression, and use for cold sores, though through limited research.
Sarah-Kate said the mushrooms were first tested on adults, including herself and Todd, before they allowed Lily to try some. If Lily felt the same positive effects that Sarah-Kate and Todd did, they would be confident in the mushrooms’ ability to improve Lily’s quality of life and make learning easier.
“Right away, she went nine weeks seizure-free, so you can imagine how that felt for us,” said Sarah-Kate. “We had never been in a position where Lily had had seizure-free weeks, let alone months.”
The family was equally elated and nervous regarding whether they had found a permanent solution but have found general success, apart from continuously learning what environmental factors such as food can be triggers.
“It’s improved our lives, and we just feel very grateful and blessed and (very healed) in a way from the trauma we’ve gone through with Lily,” Sarah-Kate said.
Now in a position to help others, Lily’s Lighthouse has heard from families and groups across the country and beyond who have sought advice on using the medicinal mushrooms for their loved ones.
Sarah-Kate serves as the organization’s CEO and “do-everything” official. Todd, a contractual lawyer, serves as president, and they have added staffers for accounting, marketing, and consulting regarding the medical aspects of the solution.
Given that at least 3.4 million Americans had active epilepsy as of 2017 and that cases are on the rise, according to the Centers for Disease Control and Prevention, the family felt an obligation to spread their story and vision of better treatment options for all.
“We couldn’t sit on this information,” said Boylan. “We felt we needed to really push, we needed to fundraise and get it into clinical study.”
Lily’s Lighthouse is not full of medical professionals providing official advice on what families should do, Sarah-Kate acknowledged. However, she cited her research capabilities that support the information on the organization’s website for people to view and compare, as a former law enforcement officer for the Australian government with training as an intelligence analyst.
The Boylan family’s end goal to establish medicinal mushrooms as an epileptic remedy mirrors the efforts of the Figi family, who found massive success in treating their daughter’s seizures with CBD oil around the early 2010s.
The next steps in that process include fundraising and finding a partner to conduct a clinical study. Sarah-Kate said multiple institutions have already approached the family and that she is working on interviewing scientists, maintaining a cautious desire to work with the “right people.”
She also said this about the organization’s current position: “Once we partner with that person, or that institution, then we’ll be able to bring our clinical study professional in from the board who will help us, obviously, make sure that (the study) is running the right way and all the processes have been put in place in the correct manner.”
Though starting a nonprofit has been challenging, Sarah-Kate said it was “life-changing” to hear positive feedback from people who have connected with Lily’s Lighthouse and swapped their stories and medicinal successes with the Boylans’ experience.
She added that the results from the organization’s first six months have made all the arduous work worthwhile.
“I want to know, what is it in the mushrooms that (are) actually working?” Sarah-Kate said, adding: “I don’t know. That’s why the study is so important.”
The first major opportunity to raise funds comes on Sunday, Dec. 11, with the “Santa Dash & Dance” from 3-8 p.m. Adult participants will meet for a run along San Clemente Beach Trail dressed in Christmas attire, starting at Parque Del Mar and ending near the North Beach train station, followed by an afterparty at Landers.
Sarah-Kate said she thought including Santa’s name in the event would provide a visual representation of gifting children joy, and that the space at Landers’ disposal could provide room for growth in the future if the event became annual.
In addition to raising money for an eventual study, she also hopes to be able to provide grants for children in the form of seizure-alert service dogs, which can be expensive.
Working with Landers manager Daniel Thompson for the event has been amazing, according to Sarah-Kate, who expressed gratitude for the restaurant’s support.
“I had never met (Thompson) before, ever; I just asked him to meet with me,” she said. “We talked and laughed and cried for like an hour and a half. He was so overwhelmed about what we were doing, and he was straightaway on board.”
Thompson told SC Times that Landers’ management likes to hold events and be involved with local groups such as the San Clemente High School cheerleading team. Sarah-Kate’s infectious energy during their meeting also was a factor.
“Hearing about Lily’s story, it was a no-brainer,” said Thompson. “We have a perfect venue with the outside and inside (space).”
Sarah-Kate added that Mayor Gene James and city staff were supportive of the event, which belied what she said she had heard from people in terms of organizing a private run in San Clemente.
“I’ve never been one to just take what other people say,” said Sarah-Kate. “I was brought up in Australia. We have a go-getter attitude and just because someone says you can’t, doesn’t mean you shouldn’t try.”
The “Santa Dash & Dance” will feature live entertainment, a barbecue buffet and drinks at Landers, as well as a silent auction.
Visit lilyslighthouse.org for more information.
C. Jayden Smith
C. Jayden Smith graduated from Dana Hills High in 2018 before pursuing a Bachelor’s degree in digital and broadcast journalism from the University of North Texas. After graduating in December 2020, he reported for the Salina Journal in Salina, Kansas. Jayden loves college football and bothering his black lab named Shadow.
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