Family Food Allergy Foundation Memorializes Elijah-Alavi
The parents of three-year-old Elijah-Alavi were devasted by the loss of their son. While at preschool, Elijah, who had food allergies including dairy, was mistakenly given a grilled cheese sandwich. He suffered a fatal attack of anaphylaxis. From that tragedy Elijah’s parents embarked on a path of advocacy and education, so that other parents wouldn’t have to experience the same heartbreak. They founded the Elijah-Alavi Foundation, which includes “Elijah's Echo,” an initiative raising awareness of food allergies and anaphylaxis. The Allergy Advocacy Association worked closely with his parents on the successful passage of Elijah's Law in September 2019. This law provides the framework to establish guidelines for daycare providers for the prevention of and response to anaphylaxis.
Silvera Family Raises Awareness of Food Allergies in Childcare Facilities
By Kristen Stewart
June 8th, 2020
It's just one little word, only three letters long, but it still has the power to break the heart of Thomas Silvera every time he uses it in reference to his son Elijah-Alavi who passed away at the age of three after an anaphylactic reaction.
"I think about the world of potential before him," says Thomas. "I think about his bright spirit that so many were robbed of experiencing. I think about his smile. I think about his best friend, brother, and my eldest son Sebi, and the life that they will no longer have together as a dynamic duo."
November 3, 2017 began like any other day with Elijah going to preschool in New York City. He had food allergies including dairy as well as asthma so the school had written and verbal instructions including asthma and food allergy action plans and his doctor's instructions about symptoms to look out for. Thomas and his wife Dina Hawthorne-Silvera had also given the school a list of foods Elijah should not be fed.
Despite these many precautions, on that day Elijah was given a grilled cheese sandwich. To make matters worse school personnel did not tell Elijah's mother what he had eaten and only said he was having an asthma attack. School personnel didn’t call 911 and didn’t administer epinephrine.
Thomas and Dina were devastated but also inspired to make a difference. "I think about how the moment where his life ended was also the moment that my life, quite literally, changed forever," says Thomas. "For my wife and I, the way this was, was us coming up from our grief deciding that Eli's life would be used to change law, policies, and practices." In short, they don’t want any other families to experience what they went through.
They founded the Elijah-Alavi Foundation including Elijah's Echo which is an initiative to raise awareness about the severity of food allergies and anaphylaxis plus the importance of education and training. They have partnered with a network of organizations and professionals to provide training, resources, and counsel for educators and school administrators. They plan to implement policies that reduce the risk of life-threatening allergic reactions in infants and children with an emphasis on making sure all the diverse communities are included in their efforts.
Their first major accomplishment was the passage of Elijah's Law in September 2019. This precedent-setting piece of legislation requires the New York Health Commissioner to establish guidelines for daycare providers for the prevention of and response to anaphylaxis. This includes everything from training courses on how to react to anaphylaxis and guidelines for creating individualized emergency health-care plans to communication and treatment protocols and allergen risk-reduction strategies.
Elijah's Law is a great accomplishment but Thomas realizes it's just the first step and that they still have more work to do. "Although Elijah's Law was passed and we rejoiced in my son Elijah's glory as it will be his legacy, many schools that we have spoken to are still unfamiliar with it as it is still considered fairly new. What I learned is this—we as a people once we work hard to get a law passed and signed it is still up to us to work within the communities at the city and state level to create awareness of the new law and get the daycares, pre-k's, etc. to know this law and adopt the newly mandated guidelines."
Getting the word out in New York is not their only goal. They want this legislation to go nationwide. A federal law is their first choice; in the meantime, they are speaking to legislators in many states to encourage them to adopt Elijah's Law and help make a difference in their areas.
Thomas has advice for parents of children with allergies as well. "Do not worry about what other people may say or think about who you are when it comes to your child who has food allergies," he says. "You are not a helicopter parent. You are not cumbersome. You are a parent who wants to make sure your child's health and safety are protected when you drop them off and pick them up from school, family or a friend's house. You are doing a phenomenal job as a parent more like an Allergy Super-Hero in my book. Stay focused, be vigilant, and continue advocating."
To learn more about the Elijah-Alavi Foundation and Elijah's Echo or to support their efforts with a tax-deductible donation, visit their website at https://www.elijahalavifoundation.org/.
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