Michelle Herman, Needham, Massachusetts

Already the mother of a young son, Michelle Herman was excited to discover she was pregnant with a girl. She’d had a girl’s name, “Zoey,” picked out since she was 13. She had no way to know that her daughter would inspire her to become a fierce advocate for medical cannabis.

Michelle Herman and Zoey

Since Michelle had preeclampsia with her then-2-year-old son, who was born at 34 weeks, she decided to ask for an additional ultrasound. That’s when her doctor informed her that the fetus was not as big as it should be, and there was something odd in the brain image. “Probably a smudge,” the doctor told her.

Michelle and her husband, who she had met while living in Israel after college, went to Orlando to consult with a specialist. It wasn’t a smudge. The diagnosis was thickened ventricles in the brain and hydrocephalus, or water on the brain. The doctor told Michelle it was no big deal. Her daughter would just need a stent to drain the fluid from her brain.

Michelle started doing research and decided to travel to Massachusetts to consult a leading expert at Boston Children’s Hospital. His diagnosis was far more serious.

Imaging showed severe structural problems with Zoey’s brain. She had structural problems with brain development linked to seizures and developmental delays. The problems were so significant, doctors told Michelle and her husband that their daughter might never wake up after birth, or if she did, she would not be able to suck.

Michelle’s blood pressure went through the roof. She had intended to stay in the Boston hospital to deliver Zoey, but the severity of the situation made her afraid not just for her baby but for her ability to make decisions about her. The medical professionals seemed to think Michelle and her husband wouldn’t be able to care for her.

“I was afraid of what might happen with the laws in Massachusetts, with its puritanical history,” says Michelle. “We weren’t sure if they would take her away, if we should maybe try another state. I wanted to go home.”

Michelle and her husband and son returned to Florida. Zoey was delivered there via cesarean section and, to the delight of her parents, came out screaming. That was more than they were told to expect.

The stress of the pregnancy had been severe, but the sedatives she’d been given to calm down meant baby Zoey showed withdrawal symptoms and got drug tested. Child and family services then got involved and accused Michelle of making up her baby’s medical condition to get attention.

“I was fighting so hard to get good care for her,” Michelle remembers. “It took three weeks to get her an MRI. Our insurance wouldn’t cover the type of imaging that might show what was going on, what to expect.”

The answer was that Zoey would have developmental delays, autism and seizures. Michelle started looking at videos online of other families’ experiences and came across Charlotte’s Web, the CBD strain of cannabis that was being used in Colorado with kids with seizure disorders. The CNN medical special Weeds 2 had just come out, and Michelle decided they needed to know more.

Michelle Herman and Zoey

Four months after Zoey’s birth, they traveled to Colorado to meet with some of the families in Colorado Springs and Denver. They learned quite a bit from the community of kids and parents, and came back asking when they could get cannabis medicine for their daughter in Florida. At that time, Florida had no program in place, and Zoey was not eligible for the CBD medicine Epidiolex. They had to wait six months just to get Zoey’s condition assessed by the state.

“They told us to just take her home love her for as long as you have,” Michelle says. “I asked for services and got suggested adoption.”

The worry Michelle lived with was that once the seizures started, they might not stop. Michelle and her husband decided they needed to relocate. They had felt out of place in Colorado, so they decided to look at the coasts.

“California was too expensive, so we decided on Massachusetts because it had a decent program, and people were fighting for better access,” Michelle says. “Plus, the doctors in Boston were the only ones who had been able to identify what was going on.”

When Zoey was 14 months old, they moved to Needham, Massachusetts outside Boston. Her development was very delayed. She could sit but not crawl.

“When we got there, immediately Zoey had occupational and speech therapy, we got an infant specialist, and I had a mothers’ group,” Michelle says. “We had to sign over our lives, but the town is amazing, and it’s been just wonderful."

When Zoey was between 4 and 5, approaching the age at which seizures were expected to start, the Davids began giving her CBD. The effects were dramatic.

“She went from speaking 1 to 2 words to 4- to 5-word sentences,” Michelle says. “She became a lot calmer, and the words started blossoming.”

Now age 7, Zoey is still seizure-free and getting toilet trained. A long bureaucratic fight over mixed up applications with the Massachusetts medical cannabis program has been resolved, and Zoey is finally getting her registry card.

Over the six years since moving there, Michelle has become a registered lobbyist and advocated with state lawmakers for program improvements. A reflexologist trained in Israel, Michelle wanted to make cannabis medicine to treat Zoey and open a healing clinic with massage and oils, but the licensing hurdles were too high. She started working with MassCann and the Massachusetts Patient Alliance, but decide neither was for her, so she founded MassSense with Peter Bernard.

Michelle’s focus is pediatric issues, with a goal of getting better definitions in state law and better access to safe, tested, consistent medicine.

“I’m trying to build in as many skills and services as I can while I can,” says Michelle. “I have this daughter who I love, but she’s like a ticking timebomb. If we’re lucky, we’ll stave off the seizures that come with adolescence.”

Michelle is also advocating for Massachusetts to help cover the cost of cannabis for those who need help. She wants the state to use program revenue to support cancer patients and people who need food, as well as an equity approach that addresses drug war impacts on local communities.

“As long as I have energy and time, I can be an advocate,” says Michelle. “There are so many mothers who will go through what I have but can’t do what I can because their kids need so much more.

This profile was originally published in the June 2021 ASA Activist Newsletter