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January 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 City daycare.
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 those words, the trajectory and purpose of my life changed forever.
On Friday, November 3rd, 2017, my baby boy was given a grilled cheese sandwich by an adult at his daycare, despite them knowing he had severe food allergies to dairy. He went into anaphylactic shock and died. Elijah was three 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.
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.
Does your child know their asthma and allergic triggers? Do they know what to do or who to tell when they feel symptoms? Do their 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 their #ThatKid Initiative. I recommend you share the resources with the adults in your child’s life so that you all 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 they're exposed to an allergen.
A complete ECP should include information on your child’s diagnosis, the symptoms they might exhibit, and most importantly, how caretakers should respond. Provide a copy of the ECP to your child’s teachers 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 their allergy. Accommodations can include adopting an allergen-free menu, removing old rugs, 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. It 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 child 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 like your home or even your child’s school. But what happens when they leave those controlled environments? The power of your advocacy keeps your child 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 them take part in the meeting so they can understand the precautions that will be taken to keep them 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, and 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 their 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.
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 their safe foods and what they're allergic to until they have them memorized. Review asthma triggers and life-saving emergency medication if your child has asthma. Teach them to use simple phrases like “I feel itchy” to indicate symptoms.
If your child is unable to speaks it’s OK, there are still ways for them to communicate their symptoms:
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.
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. And 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, which 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, or offering your passion to become a volunteer or local champion.
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!.