The California program that provides the unique medical treatment for infant botulism also brings hope to families through a simple gesture – funny birthday cards for their little ones.
Each year, about 200 cards are lovingly crafted and sent out by the Infant Botulism Treatment and Prevention Program, celebrating the first birthdays of recovered children who have endured this rare and serious condition.
Recently, many of these cards have gone to infants affected by a botulism outbreak linked to contaminated ByHeart formula.
Amy Mazziotti from Burbank received a card for her son, Hank, months after he spent 12 days in the hospital battling botulism from ByHeart formula.
“It’s really special that they take the time to send personalized drawings to each child,” she shared. “When you’re anxious about your baby, these small gestures feel monumental.”
The card initiative is organized by Robin Hinks, a program assistant tasked with the creative details like decorating and sending them out.
“I enjoy drawing animals in party hats,” remarked Hinks, who likes using crayons and colored pencils. “For instance, there’s a frog with balloons and a cute little penguin.”
The main goal of the program is to diagnose and treat a disease occurring when babies ingest botulism spores. These spores can grow in their intestines and release harmful toxins, which lead to paralysis. With advancements in treatments, mortality rates have dropped from as high as 90% to below 1%.
The only available treatment, BabyBIG, is an intravenous medication derived from pooled blood plasma of adults already immunized against botulism. This program is the only one of its kind worldwide.
Given the rarity of the condition—about 200 cases each year—the program has become a vital resource for both information and community support for affected families.
“Our mission is to prioritize the support of the children and their families,” said Dr. Jessica Khouri, the program’s senior medical officer.
Heather Goody from Gallipolis recalled feeling isolated when her daughter, MaryEllen, experienced infant botulism in 2016. Nearly ten years later, she still manages a Facebook group for parents, which has grown to over 500 members.
She remembers the joy she felt when receiving a card on MaryEllen’s first birthday.
“It stirred up so many emotions, but mostly, it filled me with gratitude for how well she was doing,” Goody expressed.
Keeping families connected was also important to the late Dr. Stephen Arnon, who identified this infant botulism form in 1976 and dedicated his life to treating it.
Dr. Arnon remained close to families affected by the disease, keeping them updated on his research for over 45 years.
Today, nearly 1,500 families stay connected through the botulism program’s parent network, celebrating milestones together, from preschool graduations to college admissions.
“It’s wonderful to see former patients starting families and still staying in touch with us,” said Khouri. “It’s truly a rewarding part of our work.”
