Life for Gay, Steve, and Lilly Grossman is, and has been for years, filled with endless doctors, hospital visits, and medical tests for now 15-year-old Lilly. Up until very recently, she hadn’t slept through the night because of violent tremors she suffered with since the age of four. Lilly, who uses a walker or wheelchair, spent a week to 10 days in the hospital, each year, fighting the common flu all our children face each year.
Gay (Johnson) ’88 and Steve ’87, college sweethearts at OWU, married shortly after graduating and settled for 16 years in Cleveland, the city where Steve grew up and with family and friends they loved. Gay had been an economics and English double major; Steve, an economics major and English minor. They worked at jobs they enjoyed. Gay worked for Glaxo, then started Notable Expressions, a retail stationery business, making it easier to stay home when they planned to have children. Steve specialized in healthcare software. Eight years after their wedding, Lilly was born. Within a few years, it was apparent that Lilly couldn’t thrive in the harsh Cleveland weather. It was too hot and humid in the summer and the snow and ice proved challenging with walkers and wheelchairs. “We spent about nine months of the year inside,” said Steve. After talking with friends and listening to The Weather Channel, the Grossmans decided to move to southern California in 2005. They now live in La Jolla, a suburb of San Diego. Gay sold her stationery business based in Ohio, and started Letters from Lilly Stationery. “Before we moved, I researched schools to find the perfect fit for Lilly. Once we found her school, we looked for a home nearby,” noted Gay. “We wanted a school that was easy for Lilly to access with few or no stairs, a cool breeze, and people who would see her strengths, not her physical weakness.”
The principal at Torrey Pines Elementary was, in fact, excited to have Lilly.” Now a sophomore in high school, Lilly has not been in a hospital overnight, even one time. “It’s been a great move,” says Gay. But the fact that there still was no diagnosis for Lilly’s mystery illness—once erroneously thought to be some sort of mitochondrial disease—still saddened, puzzled, and frustrated the Grossmans.
In 2008, for the first time, Lilly began losing weight as a sixth grader. Gay and Steve continued to give her supplements, amino acids, and eventually, there was a muscle biopsy and nerve and spinal tap ordered by Lilly’s doctor. All tests came back normal, as they had all her life. And while she thrived in San Diego’s temperate climate, the night tremors that wracked her body, continued increasing in severity and duration.
“I had heard about genome sequencing for years, but it just wasn’t available to the general public,” says Gay. “They could map your genome, but they didn’t know what to do with it.” In June of 2011, Gay read an article from NPR that had come through Facebook, “Twins Diagnosed Through Genome Sequencing.” She saw that the family was not only in San Diego, but had the same doctor as Lilly. Gay explained they weren’t able to get sequenced where that family did because the study required siblings. “I am always reading and searching for options for Lilly,” says Gay. “Through a couple we met at an Ohio Wesleyan alumni function, we learned that genome sequencing was starting to be done right at our local hospital.” Days later, the Grossmans heard about a new study, and submitted an application for research that would enable the researchers to utilize genome sequencing to find answers to Lilly’s illness.
“We heard this past November that we were accepted into the study,” says Gay, noting that Lilly was the only one chosen for the Idiom Study at Scripps Research Institute. Immediately Lilly, Gay and Steve had their blood drawn to begin the research.
“After getting all their genomes sequenced, waiting months for the analysis, we confirmed that Lilly does not have mitochondrial disease,” shares Gay. But apparently, there are two affected genes, and one of them causes night tremors; the second gene is affected in two places. The possibility of finding a drug that could finally help Lilly was becoming a reality.
“I have always told Lilly that she can do everything that others do, with just a few adjustments,” says Gay. “Finding an answer to her tremors makes that even more possible.” But not without what has been the persistent and loving care and motivation of Lilly’s devoted parents and others.
“Gay has become an expert in healthcare bureaucracy and billing, and not by choice,” says Steve. “She spends hours on the phone providing support, advice, and motivation to mothers of kids with special needs and breast cancer fighters (she recently was diagnosed and treated for the disease).” He shares the importance of their “glass half full” philosophy. “We’ve always said it could be a lot worse, so we need to buck up and figure out the path forward.”
Today, Lilly has slept weeks at a time, tremor free. It will take some time to adjust the treatment to be perfect every night, but, as Gay says, “This has been life changing for all of us, especially Lilly.”