Each year, during Food Allergy Awareness Month, I typically take this as an opportunity to discuss how food allergies impact my family, how we manage them, and why they deserve your attention. However, this year, things are hitting differently, but I won’t stop fighting.
About six months ago, we confirmed my son is no longer allergic to one of the foods that gave him the most trouble: sesame. A food that once almost cost him his life, but because of treatment, won’t have the opportunity to steal him away.
He and I both still have food allergies. At least, technically, he does. We suspect that as we challenge his other allergens, we will confirm he has either outgrown or been essentially cured of them, too.
During our journey with his food allergies, the advocacy and support communities available to patients and their families kept me afloat. From the initial diagnosis, through the steep learning curve associated with navigating an allergy outside the top eight, and through treatment, they were there with a sympathetic ear and plenty of good advice.
The stress of label reading, calling companies, cooking from scratch, wiping down every public surface, constant hand washing, and the constant concern for my child’s life took a toll, and other food allergy families were there to catch me. It was those parents who gave me the confidence to administer life-saving epinephrine when my son had a serious reaction because they instilled in me the vital importance of epi first, epi fast. (Very important note here: please don’t ask online support groups whether to administer medications; what I’m referring to here is the discussions in advance of my son’s reactions that made me confident in assessing the signs and symptoms of anaphylaxis and made me feel less nervous about providing a life-saving drug that was prescribed for that very situation).
But now, after years of active involvement in these support communities, my family is moving on. Part of me is heartbroken. Not because my child no longer has life-threatening allergies; that is a miracle. No, I’m heartbroken because I’ve been where those patients and parents are, wishing my child was cured, wishing it had been us.
However happy we are that we are no longer in constant fear of his food allergies, we are leaving behind families that helped save my child’s life as we move into this new chapter. In a sense, I feel guilty. Why us? They are no less deserving of a cure, and while I celebrate, other families are mourning the loss of their children.
It is for every single food allergy patient, every single caregiver, and loved one that I continue to advocate for those with food allergies. Until the relief my family feels is possible for every one of them, there will still be work to do.
I hope you’ll join me in fighting for a cure, and until one is possible, working to make our world safer for food allergy patients. If you don’t want to do it for my family, that is fine. Please do it for Elijah. Oakley. Órla. Amy. Sergio. Natalie. Do it for the countless other lives lost to allergic reactions and every loved one left behind. And do it for the countless lives increased awareness can save. I promise it makes a difference.
You can learn more about food allergies using the resources below:
- Food Allergy Research and Education (FARE)
- Elijah-Alavi Foundation and Elijah’s Law
- American College of Allergy, Asthma, & Immunology
- Also, be sure to check out my other posts on Westchester County Mom
