Published: Jan. 21, 2021

As president and co-founder of the Elijah-Alavi Foundation, Thomas Silvera works tirelessly to increase public awareness of food allergies and asthma. His work is a tribute to his late son Elijah, who tragically passed away in 2017 after a food allergen was given to him at a New York daycare.

How to Become a Food Allergy and Asthma Advocate


My name is Thomas Silvera, and I lost my son, Elijah, to food allergies. I thought it was a terrible joke—that there was no way what I was hearing could be true. The moment I heard the news, the trajectory and purpose of my life changed forever.

On Friday, Nov. 3, 2017, my baby boy was given a grilled cheese sandwich by an adult at his daycare, despite the facility knowing he had severe food allergies to dairy. He went into anaphylactic shock and died. Elijah was 3 years old. It was a tragic accident that could have been avoided had the daycare staff taken swift action. Soon after, my life’s mission became educating people on food allergies, asthma, and how knowledge can quite literally save lives. That’s why I started the Elijah-Alavi Foundation.

They're just allergies. How serious can they be?

We need to stop dismissing the severity of allergies and asthma. Yes, there are treatments and safety precautions that can be taken. But there is no cure, and the world can be a scary, allergen-riddled place. This is especially true for our children who are in the care of schools and daycares.

In fact, food allergies and asthma affect one in eight children, and every three minutes, a food-allergic reaction results in a visit to the emergency room.1 Furthermore, there are approximately 1.8 million ER visits per year due to asthma, with asthma being among the top three causes of hospitalization for children.2

These are staggering statistics. And if you’re like me, your reaction is “What can we do about it?” The answer is simple: education and advocacy for yourself, for your children, for teachers and caregivers, for other families, and even for healthcare providers.

Teach advocacy at a young age.

Does your child know his or her asthma and allergic triggers and know what to do or who to tell when he or she feels symptoms? Do teachers and caregivers know? These are important questions to ask and the crux of our work at the Elijah-Alavi Foundation. We help educate daycare workers and teachers about food allergies and asthma, and—just as important—we help kids ages 3 to 12 advocate for themselves through our Elijah’s Echo Ambassador Program.

If you’re a first-time advocate, then welcome to the community. There are several great online resources, including those we created in partnership with Allergy Insider for its #ThatKid Initiative. I recommend you share the resources with the adults in your child’s life so that you can work together to create more safe spaces for your family. Don’t be shy. After all, knowledge is power. 

In addition to these resources, I’ve leveraged my experience and knowledge on the topic to create an advocacy starter kit. These are things that have helped my family and I facilitate conversations about allergy and asthma.

 

1.  Be prepared.


Team up with your healthcare provider to create a written Emergency Care Plan (ECP). All children with allergies and asthma should have one. This very important document should outline your child's allergy in detail as well as the type of reaction your child has when exposed to an allergen. 

A complete ECP should include information on your child’s diagnosis, the symptoms he or she might exhibit, and most importantly, how caretakers should respond. Provide a copy of the ECP to your child’s teachers and/or caregivers and review it with them so they can properly respond to an emergency if it arises. The school can keep this file on record and reference it as needed throughout the school year.

For severe allergies and asthma, your family can also consider a 504 plan.3 A 504 plan is part of the Americans with Disabilities Act (ADA) and is a contract with your child’s school or daycare promising that the facility will accommodate for disabilities. According to the ADA, food allergies and asthma are classified as disabilities, and your daycare center must accommodate your child's needs when it comes to his or her allergy. Accommodations can include adopting an allergen-free menu, removing old rugs, and/or allowing your child to use inhalers during class.

Important: Since allergies and asthma can evolve over time, the ECP and 504 plan should be reviewed as new triggers or sensitizations are diagnosed. Reactions can also vary. Just because a child’s previous reaction was mild does not mean that the next reaction will be mild.

2.   Be informed.


Asthma emergencies and food allergy emergencies are different and should be managed differently. In addition, every child is different. After my son Elijah was mistakenly given a grilled cheese sandwich, a daycare worker thought he was experiencing an asthma attack and not an allergic reaction, which led to his death. My son Eli sometimes has a tightness in his chest with his asthma, but not necessarily wheezing. Going over his emergency care plan helps ensure his teachers know what to look out for and how to identify an emergency situation.

Because the symptoms of a food allergic reaction and asthma can be mistaken for each other, the responses by caregivers can be life-or-death decisions. They can mean that life-saving epinephrine isn’t administered or an inhaler isn’t provided.

That’s why it’s so important to teach your kids how to talk about their allergies and asthma. They don’t always have the language needed to verbalize their symptoms, but it’s important to work with your children to make sure that they can communicate any concerning symptoms to the adults in charge.

3.  Be proactive.


It’s easy to feel prepared in a known environment such as your home or even your child’s school. But what happens when children leave those controlled environments? The power of your advocacy keeps your children safe even when you’re not there.

Whether it’s a class field trip or a birthday party, be upfront about your concerns and the accommodations you need met for the safety of your child. It's essential that everyone around understands exactly how severe your child’s allergies can be. No one wants to be “that parent,” but when your child’s life is on the line, you’d be amazed at how easy it becomes to ask for what you need.

Discuss the precautions that need to be taken in order to keep your child safe, and have a plan for what to do in the event that your child is exposed to an allergen.

Schedule a meeting to go over your written food allergy plan with all the adults who will interact with your child. Be prepared to thoroughly discuss your child’s food allergy plan. If your child is old enough, it may make sense to have him or her take part in the meeting to better understand the precautions that will be taken to keep him or her safe.

4.  Be brave.


This might feel like a no-brainer, but I cannot emphasize enough how important it is to make sure your child always has access to emergency medication.

Asthma and food allergies are manageable conditions, but it’s very important to always consider the possibility that your child may need emergency medication. The thought of anaphylaxis can be terrifying, but it's important that you're fully prepared in the event that your child experiences such symptoms. Your bravery and preparation can get your child and related caregivers through that situation. As an advocate, you’ll be the leader that all your child’s caretakers look to. So in addition to the information and treatment plans, share your bravery and passion with the adults in your child’s life so that they can feel empowered to be champions for your child’s safety.

Your Child’s Role

It's key that educators and other caretakers understand the difference between asthma and anaphylaxis. It’s best to start talking with your child at a very young age. Continually repeat his or her safe foods and allergens until they're memorized. Review asthma triggers and life-saving emergency medication if your child has asthma. Teach your child to use simple phrases such as “I feel itchy” to indicate symptoms.

If children are unable to speak, it’s OK. There are still ways to communicate symptoms:

  • Holding their hands to their throats to indicate trouble breathing.
  • Gesturing that they need their rescue inhalers.
  • Using “stop” signals by raising their hands to let teachers or caregivers know that the food is not safe for them.


5.   Be collaborative.


Don’t do this on your own. There are other families like yours who are challenged by allergies and asthma. Lean on them and allow them to lean on you. Together you’ll become stronger. Here are a few examples of groups you and your family can reach out to for support:

Family and Neighbors
Sleepovers, parties, and visits to Grandma’s house come with risks for your child. Carefully going through your child’s ECP with everyone close to you can improve the chances that any emergency will be handled successfully. They should all know how to recognize an emergency, how to administer rescue medication (e.g., an Epi-pen or albuterol), and who to call.

Healthcare Providers
Your child’s healthcare provider is a key resource for understanding what’s going on in your child’s body when exposed to an allergen, what that allergen is, and what to do when your child experiences symptoms. Take your provider’s advice, learn it well, and spread the word to your family and friends. Your child’s doctor should also be learning from you. Information should flow freely in both directions between you and your child’s provider.

Patient Support Organizations
There are organizations and groups whose primary goal is to promote as safe and as normal a life as possible for families like yours. Two that come to mind are the Food Equality Initiative and my foundation, the Elijah-Alavi Foundation. Both focus on providing food safety and security to families that have members with food allergies and intolerances. Do your research to see which organizations are most active in your community so that your family can benefit from their resources. As an advocate, you can help to boost the impact of these organizations by donating, fundraising, and/or offering your passion to become a volunteer or local champion.

 

Advocacy creates community.

Remember that when you commit yourself to being an advocate, you’re creating an entire community of allergy and asthma experts who will have your child’s best interests at heart. And that’s well worth the effort!.

 

Tools for Understanding Allergies

 

Track allergy symptoms and prepare for a visit with a healthcare provider.

Learn about specific allergens, including common symptoms, management, and relief. 

Are you a healthcare provider? Get comprehensive information on hundreds of whole allergens and allergen components.

  1. Clark S, Espinola J, Rudders SA, et al. Frequency of US Emergency Department Visits for Food-Related Acute Allergic Reactions. J Allergy Clin Immunol. 2011 Mar;127(3):682-3.
  2. Asthma and Allergy Foundation of America. https://www.aafa.org/asthma-facts/ Accessed October 2020.
  3. Food Allergy Research And Education. https://www.foodallergy.org/resources/section-504-and-written-management-plans Accessed January 2021.