Violet is a science kid. She loves trees, dirt, bugs. She’s at home in Central Park, digging, sniffing, touching nature. Worms don’t gross her out, and neither do rats. She finds both “cute”. She notices every house sparrow, knows the difference between a pigeon and a dove and dreams of swimming with dolphins and manatees.
She is an enthusiastic budding chef, equally comfortable slicing salad vegetables or mixing the Sunday morning pancake batter. She is a prolific reader, a ballet dancer and an artist. She is also a food allergy kid. But she is not a food allergy “sufferer”.
Let me explain. Diagnosed with egg, peanut and several tree nut allergies before she was 2 years old, our daughter has been allergic since she can remember. It’s mostly quite manageable and not all bad. In pre-school, kids brought lunch from home; Violet did the same. When the birthday parties began, she was young enough to accept her special treats as her buddies tucked into their cake. When she noticed difference, she briefly fell on disappointment, but soon declared a preference for candy. To this day, our 7-year-old naturalist favors gummies and allergy-friendly chocolate, so celebrations are generally no sweat.
Our food allergy predicament is ironic, since I’ve been obsessed with food for most of my adult life. As an NYU Food Studies graduate student, my classes spanned food and culture, food politics and nutrition. In my downtime, I worked at a number of Manhattan restaurants (while a regular at many more). I’m forever discussing the myriad ways that food shapes the world. I shop at farmers’ markets and belong to a food book club. My mom was an early devotee of New York City’s Union Square Greenmarket, and my father cooked our meals from scratch. Their nostalgia for the food of our family’s Ukrainian heritage was palpable – oh, the sumptuous ice cream and peasant bread!
When Violet was born, I couldn’t wait to share my comfort foods with her. Homemade chicken noodle soup, pan-roasted wild salmon, egg shakshuka, market heirloom tomatoes sprinkled with sea salt. But when, at a year old, her first soft-boiled egg resulted in angry blotches on her face and torso, we found ourselves on a different path. She tested allergic to eggs. Peanuts and most tree nuts were soon added to her list of allergens to avoid.
I was comparatively well-primed to guide Violet about mindful eating. While she certainly couldn’t eat a random slice of pizza without checking ingredients, I didn’t typically eat that either, often seeking out handmade dough, sauce and buffalo mozzarella. I didn’t grocery shop at the corner food store; I took the bus several miles to the market with the freshest produce and meats. For our family, adding allergens to the list of considerations was not hugely impactful. We would make sure Violet was safe, but we would enjoy birthdays, school functions, restaurant dining, air travel, all of it (with antihistamines and auto-injectors in tow).
Recently, on social media, I’ve encountered fledgling food allergy parents mourning a loss of freedom and feeling food allergy-related isolation. At times, I’ve chimed in to share our family’s story: for us, food allergies are a hurdle we’ve learned to navigate.
Our family has been able to take this positive attitude all the way to the Phase 3 clinical trial of Viaskin’s peanut patch. Violet joined the trial in the spring of 2017, and proudly wears her patch 24 hours a day. The novel therapy continuously introduces a small amount of peanut through the skin, with the goal of desensitizing participants. While the jury is still out on the results, the process has been empowering.
Violet views herself as both the scientist and part of the science, advancing toward a cure for herself and her peers. Though her life with allergies is not entirely without struggle, Violet eats better, and knows more about food than many adults.
My husband and I continue to speak with Violet and her 3-year-old sister Clementine about ingredients and eating styles. In other countries, such as France, feeding is a school subject, while in the U.S., most kids eat burgers and fries and peanut butter sandwiches. Food allergies present a unique opportunity for education and gastronomy (Violet rarely orders off the kids’ menu, for both culinary and allergic reasons).
My advice to fellow food allergy parents: find solace in informing yourselves and your kids, and in the research, the advocacy and the critical mass of affected individuals. So many resources are starting to be devoted to food allergy research; our children will ultimately benefit. Most importantly, when considering food allergies, realize that the condition is on a continuum, a highly impermanent predicament that brings more opportunities for treatment every day.
Natalya Murakhver is the co-founder of Apple to Zucchini, a healthy family-eating company based in New York City.