FARE Leadership Spotlight - December 2021

• What is your name, where do you call home, and what is your food allergy connection?

My name is Debbie Spano and I live in Westchester, N.Y., with my husband Jeff, 10-year-old son Chase and 5-year-old daughter Sylvie. Unfortunately, my first food allergy experience was when I gave my 6-month-old son his first soft food. I was alone with Chase in our New York City apartment, I was excited for this special moment as a new mother. It was so precious to see his eyes widen and his little lips open for a spoonful of yogurt. With one touch to his tongue he began to wriggle and scream. He turned bright red and then fell immediately lethargic. Unaware of my reality, I placed him in his crib to sleep off what I thought to be a lactose intolerance. I was lucky that he woke up. A few weeks later, he had a new milk-based formula and had the same reaction. We called his pediatrician and learned that he was in life-threatening anaphylactic shock most likely due to a milk allergy. Before this, I never knew that someone could be potentially deathly allergic to dairy.

• What drew you to FARE? Why do you support FARE?

I was in my seventh year of being a food allergy mom, I had the whole role down pat and was always surrounded by a supportive community. From Chase’s diagnosis, I relied on FARE for their excellent resources. However, after an unfortunate exposure to what was supposed to be a trusted food, Chase had to fight for his life in front of his friends at a birthday party. This left him in a paralyzing road block consumed with anxiety. He withdrew from friends and preferred to only be around his safe guards who were me, Jeff, and his babysitter Charmaine. He developed an unhealthy fear of eating. He was too nervous and barely ate at school leaving him unable to concentrate. In desperate attempts to find help, I searched the internet and networked with many people. I was connected to Lisa Gable who spent time with me and invited me to the FARE Connecticut Luncheon Fundraiser and also to Washington to my first FARE Summit. I realized that our situation was not isolated and in fact 32 million other Americans have potentially life-threatening food allergies. Since my deeper introduction to FARE, I have been overwhelmed with support and have developed great bonds with people in similar situations as our family.

• When you think of FARE, what first comes to mind?

Hope is the first thing that comes to mind when I think of FARE. Science is most likely the only thing that will help improve Chase’s food allergies. With FARE being the largest private funder of food allergy research, we like to stay fully connected. A favorite mantra of mine is to control your controllables. While, we can’t control that Chase has food allergies, we can control what we do about it. We choose to spend our time taking action. This is why we raise money annually and participate in many of FARE’s great advocacy events such as legislating with Congress.

• What is one thing you would tell any food-allergic person or parent/guardian of a food-allergic person?

The first thing that I always tell a new person dealing with a food allergy is, “Don’t wait!” If you are unsure if you are in an emergency situation, you are most likely in one. If you say, “Should we call 911?” then you should. Anaphylaxis is like a snowball rolling down a mountain. It only gets bigger with time. Epinephrine is the only treatment shown to stop anaphylaxis. You truly only have minutes to react. Be brave. You’ve got this!

• What is the best food allergy advice you ever received?

Long-time food allergy advocate and fellow food allergy mom, Amie Rappoport McKenna, gave me the best advice. She taught me that my role as Chase’s advocate is to keep him safe and that not everyone is going to understand or appreciate his situation. She explained that it's easy to respond with anger and frustration. She said don’t set out to change the world, but if you only move the needle 1% in education and awareness, you moved the needle and you should be proud of that.

• What is your favorite hobby or pastime?

Well, these days when I’m not volunteering at Rye Resurrection Grammar and Middle School, you will find me at The Westchester Country Club. These pandemic years have given me the opportunity to spend more time playing squash, tennis, and even golf! I’m thankful to be able to play sports with my husband, children and an amazing group of women and friends.

• What is your favorite allergy-friendly dish to make on during the holidays?

Chase is allergic to dairy, most tree nuts, some finned fish and he recently grew into a beef allergy. Our main focus has always been inclusion. We love to be able to replicate what others are eating whether it be at a family dinner or school event. It’s very easy to find substitutes to make him feel included. However, our favorite dish to make has been chicken parmesan over penne pasta.  If I’m really giving it a go, I’ll even make Cousin Jeanne’s famous red sauce…or as she calls it, gravy. We make sure that the bread crumbs are dairy free and find that vegan parmesan tastes very similar to the dairy version. Marrying into an Italian family, we often find this dish as a go-to staple!