Jarrett Arbogast remembers he and his wife, Nikki, staring at their 6-month-old daughter, Payton, their facial expressions a mixture of happiness and confusion.
Payton was a beautiful baby girl — but she would not sit up.
Four months passed, and similar milestones seemed to slip away. She wouldn’t roll over. She wouldn’t play with her toys. She still wouldn’t sit up.
Payton’s symptoms progressively worsened. Loud noises inexplicably startled her. An inability to coordinate muscle movement between her mouth and tongue caused her to choke on food and produce excessive saliva.
“We went through 10 bibs a day just from her drooling,” Arbogast, of San Ramon, recalls.
Following a routine 10-month checkup and a visit to the ophthalmologist, who noticed cherry-red spots in her eyes — an indicator of Tay-Sachs — Payton was diagnosed with the neurological disease.
Infantile Tay-Sachs usually kills its victims by age 5. Payton died when she was just 31⁄2.
Before their daughter’s death in December 2006, the Arbogasts made a promise to her that they would continue working until a cure for Tay-Sachs is found.
Jarrett Arbogast will join genetics counselor Cecilia Fairley in leading an informational bagel brunch about Tay-Sachs June 21 at Temple Beth Hillel in Richmond.
“There are a lot of family stories like my own, with people who have absolutely no idea [about Tay-Sachs],” Arbogast says.
According to the National Institute of Neurological Disorders and Stroke, the incidence of Tay-Sachs is particularly prevalent among people of Eastern European and Ashkenazi Jewish decent.
However, in a 2000 article published in the European Journal of Pediatrics, author Michael Kaback wrote that in the United States and Canada, the “incidence of Tay-Sachs disease in the Jewish population has declined by more than 90 percent since the advent of genetic screening.”
A 2005 Ha’aretz article supported Kaback’s findings, noting that as a “Jewish disease,” Tay-Sachs had almost been eradicated.
What’s surprising is that Jarrett and Nikki Arbogast are not Ashkenazi — in fact, they’re not even Jewish. Jarrett’s ancestry was predominantly German, with “a little bit of this and a little bit of that.”
That the disease is increasingly affecting the general population is part of his message when he leads speaking engagements. Those play a major role in keeping his promise to Payton.
So does fundraising. Last December, Arbogast’s local Peet’s Coffee and Tea in San Ramon raised more than $4,500 to help find a cure for Tay-Sachs. His intention was to hit up “Peetniks” for donations toward raffle baskets; what he got was so much more.
“I was hoping to generate maybe $1,000,” Arbogast says. “Then [Peet’s] brought in a whole other store from down the block. I was pretty excited, blown away for sure.”
Arbogast also volunteers with the National Tay-Sachs and Allied Diseases Association in Boston and the Cure Tay-Sachs Foundation. Since its founding in 2007, the Cleveland-based organization has raised more than $800,000 in nationwide and international donations.
While he’s on somewhat of a “fundraising hiatus” right now, Arbogast hopes to partner with the San Ramon Valley School District to foster awareness with Tay-Sachs’ most vulnerable demographic — children.
“Having the opportunity to touch that one person is key,” Arbogast says. “You never know who’s listening and can offer you something else.”
Knowing all he does now, Arbogast says he would have almost immediately recognized Payton’s symptoms as Tay-Sachs disease.
But, he adds, he, his wife and their 12-year-old daughter, Bailey, prefer to remember Payton as a “smiley and happy kid” — not as a sick child.
“She loved being outside,” Arbogast says. “She laughed when she heard the birds chirping. We went on walks every night because she really enjoyed it. She was always laughing, always smiling.”
“Facts about Jewish Genetic Disorders” is 10 a.m. to noon June 21 at Temple Beth Hillel, 801 Park Central, Richmond. It is free and open to the public. For information or to RSVP, e-mail firstname.lastname@example.org.