JUSTICE FOR ELIJAH: REFLECTIONS ON OUR FOUR-YEAR JOURNEY
By Thomas Silvera and Dina Hawthorne-Silvera
Looking back on the past four years without our happy, smiling Elijah, we are both amazed and heartbroken by the milestones achieved and the knowledge we (as a society) have gained. Amid unfathomable sadness, laws have been created, a foundation was established, and critical food allergy education has been shared at levels we never could have imagined.
While recounting memories is painful, talking about Elijah – and our efforts to keep his memory alive – have been therapeutic. It is important we take time to remember the past, stay grounded in the present, and remain optimistic for the future.
HOW IT BEGAN: A SEARCH FOR ANSWERS
In the weeks following Elijah’s death, we were faced with two options: channel our grief into change or be destroyed by the devastation. We chose change. We channeled all the anger, bitterness, and rage we felt to move us into action. We sought to understand why Elijah’s child day care program was so ill-equipped to handle an anaphylactic emergency and investigated what laws were established – and moreover, what still needed to be done. Our goal was to not only protect other families with food allergies, but to also empower and protect the child daycare providers who would potentially need to step into action.
Our findings were alarming and spanned beyond citywide regulations: in New York state, implementation of guidelines for prevention and recognition of anaphylaxis in child day care programs settings was voluntary. We read in disbelief and sprang into action. Initially looking to make change on a local level, we connected with city officials, district assembly member Al Taylor and Senator Brian Benjamin to get answers. We were determined to leave no stone unturned, sending countless emails and making infinite phone calls to ensure that our efforts were both purposeful and impactful. Unfamiliar with the New York political system or legislative process, we relied on Assembly Member Taylor and Senator Benjamin’s guidance (and patience!) to help ignite the spark we so desperately desired. It didn’t take long to realize we needed to set our sights on bigger, state-wide change, understanding that true impact would be made from the top, down. And just like that, “Elijah’s Law” became more than just an idea. It was now a tangible goal that we were determined to achieve. We wanted more than political change, we also wanted to serve as a destination for those seeking information on food allergies and anaphylactic emergencies. From this, the Elijah-Alavi Foundation was created – offering resources, community events and real-life inspiration for other families and caregivers impacted by life-threatening allergies and asthma.
HOW IT’S GOING: TO NEW YORK STATE, AND BEYOND
Now that the legislation has passed in our home state (as well as Illinois and soon in Pennsylvania), we are thrilled to see the impact of “Elijah’s Law” finally come into effect. Implemented in the fall of 2021, the New York State Department of Health and New York State’s Office of Children and Family Services’ (NYS OCFS) Anaphylaxis Policy for Child Day Care Programs established specific guidelines for both the prevention of anaphylaxis, as well as guidelines on what to do during an anaphylaxis emergency. This includes free resources, training, and the provision of epinephrine auto-injectors for all NYS OCFS-licensed and registered child day care programs across the state. While we live with the grief of losing our son, the comprehensive programs that have been set in place create a strong precedent for other states to execute similar policies. As a proud Brooklynite and New Yorker, it means the world to have our state champion “Elijah’s Law” and show the country that if food allergy legislation and implementation can take place in New York, it can happen anywhere.
HOW IT WILL BE: OUR HOPE FOR THE FUTURE
While our work was motivated by Elijah, we are also raising awareness to safeguard his nine-year-old brother, Sebastin – or as he’s referred to by the Foundation, our “Director of Smiles.” Like Elijah, Sebastin also has severe food allergies, and we want to ensure his health and safety in the many years to come. We want parents of children with life-threatening allergies to rest easy, knowing their child day care providers are armed with proper education, resources, and tools to handle any anaphylactic emergency. At the same time, we want child day care programs to understand the risks and consequences of life-threatening allergies, allowing precautions to be taken with ease and certainty. Despite our efforts since Elijah’s passing, the reality is that life-threatening allergies will always be out there. That said, we choose to direct our focus on a solution: the pursuit of knowledge and understanding. Because in knowledge, there is power, comfort, and confidence.
Support for this article was provided by Kaléo.