The official motto of the Pi Lamda Phi fraternity (Pilam, for short) is “Not Four Years But A Lifetime,” and they aren’t kidding. That’s what David Law ’04 discovered four years ago when his wife Veena gave birth to a beautiful baby girl named Violet.
“The first nine months were perfect,” he says. “But when Violet was ten months old Veena noticed that her neck was a little more flexible than other babies. She’s a pediatrician, and she knows how children should develop, and it wasn’t happening with our child.”
They took her to the hospital for genetic testing, and, after a yearlong diagnostic journey, the results made their hearts sink: Violet had GM1 Gangliosidosis, a rare, neurologically debilitating disease that is fatal in children.
“Even doctors with decades of medical experience have never heard of it,” says David, an internist himself. “We did a Google search, but there was nothing out there. It affects only one out of every hundred thousand babies, and there are no FDA-approved therapies.”
So they fought for their daughter’s life the only way they knew how – by doing everything they could to increase public awareness and raise funds for GM1 research. But it was a lonely struggle – until David’s Pilam brothers found out about it.
“Brother Ajay Kshatriya ’99 organized meals for my family and our basic shopping needs in the first few weeks as we went through all this,” says David. “He also helped us navigate the biopharmaceutical world, where he spent many years working. So did Brother Bing Yune Chen ’04. He’s joined the board of the Cure GM1 Foundation along with me and is helping us fundraise and advocate for more research. Brother Ronnie Exley ’04, who is a music festival promoter, organized a festival in Los Angeles called ‘A Cure For Violet’ that raised thousands of dollars.”
David and Veena started a GoFundMe campaign, hoping to raise $20,000 for medical research. In just a few weeks it raised over $100,000, in large part thanks to donations from Pilams.
“I was afraid we’d be isolated after learning the situation we faced, but even guys who I never met were offering their support. We never felt isolated because our Pilam community was always checking in with us and including us in their other family activities. All their kids got to know Violet, and that was very nice, too.”
Thanks to all this fundraising and advocacy, Violet was accepted into a clinical trial in November 2021. “She is stable in her clinical trials drugs, so we’ve seen some progress in certain areas of this disease and definitely seen stabilization in other areas,” says David. “This year alone, we’ve seen her go to her special education preschool, where she has friends. She celebrated her third birthday in the park with her family and friends and has been to every amusement park in Southern California. Last December she celebrated her third Christmas.
“The natural history of GM1 is pretty severe and terminal; but with new meds coming down the pipeline, it could change our predestined future with this rare disease. We’re definitely in a generation where this condition could be treated and possibly cured. So we’re scared but excited for the future.
“And amid all this tumult I have found the strength and support from my brothers invaluable. Brother Dave Binetti ‘91 says, ‘Pilams will be the groomsmen at your wedding and the pallbearers at your funeral,’ and these guys have been with me through thick and thin. I attribute their help with heartening my life and advancing our cause. I feel very blessed.”
To find out more, visit A Cure For Violet on Facebook. And if you’d like to sign a petition to create a GM1 Awareness Day in California, here’s the link: http://change.org/cureviolet.
Update: Sadly, Violet passed away on November 11, but her father David vows that the fight to beat this disease will go on. He and his Pilam fraternity brothers have already raised thousands of dollars for research, and last spring the state of California declared May 21 as GM1 Gangliosidosis Day to increase public awareness. In her short life Violet enjoyed swimming, trips to Disneyland, music festivals, friends, and being with her family, including her baby brother Derek, who, thankfully, is free of the disease. In lieu of flowers, the family asks that donations be made to the CureGM1 Foundation, where David serves as a board member.
