This week, watch the Nasutis take on their regular challenge of food shopping—no easy feat, considering that two out of the three children have life-threatening food allergies. Brett was born allergic to 15 foods, and his little brother, Nicholas, is allergic to 16. Their sister, Taylor, doesn’t have any food allergies, like her parents. In order to keep them all fed, Robyn makes three different meals every time her family eats, which requires her to drive to three different grocery stores. And the specialty foods don’t come cheap; dairy-free milk alone costs her $10 a gallon. “I spend about $850 a month on groceries,” Robyn says.
My name is Robyn Nasuti and I’m the mother of three children: Brett, 11, (who’s featured in this series and pictured here), Taylor Marie, 10, and Nicholas, 5. Brett is allergic to dairy, peanuts and eggs. Taylor has no food allergies and Nicholas is allergic to peanuts, dairy, eggs, lamb, chicken, turkey, sesame, almond, wheat, oat, spelt, banana, pea and walnut. He just outgrew his soy allergy last month.
My husband, Alan, and I found out about Brett’s allergies when he was 1. I started keeping a journal because every time I went to the doctor, they’d ask me questions about his skin, asthma and reactions, and I couldn’t keep it straight in my head. By writing down my thoughts, I was able to find peace — and also helped doctor’s determine how to best deal with Brett’s allergies.
Here’s an excerpt from my journal.
This is the first in a series of videos about Brett Nasuti, an 11-year-old Children’s Hospital Boston patient who was born allergic to 15 foods. Brett is the very first Children’s patient to go through a milk exposure desensitization trial—the first of its kind in the country—which could cure him of his severe milk allergy. In this video, you can watch Brett and his mom, Robyn, talk about what it’s been like for their family to live with his life-threatening condition and their hopes for the trial’s outcome.
Stay tuned each week to follow Brett as he goes through the study, during which he drinks more and more milk after getting injections to ward off allergic reactions. You can see him take his first-ever sip of milk and hear him talk about what it’s like to live with a life-threatening allergy. You can also watch Robyn shop for her two kids with food allergies (she cooks three different dinners each day for her family) and hear Brett’s classmates talk about what they’ve learned from him. Plus, check back to see Lynda Schneider, MD, the director of Children’s Allergy Program, discuss the shocking rise in food allergies and how this trial represents a path to a potential cure.
Also, in October, we’ll publish a story about Brett and the study in Dream, Children’s magazine for patients and families.
Do you have food allergies or have a child with them? How have they impacted your life?
Have thoughts about why there’s been such a dramatic increase in food allergies in recent years? Share them here.
Check out the second video in the series, where Dr. Schneider talks about how the clinical trial works.