Gerardo: On behalf of the Elijah-Alavi Foundation, thank you for extending your time, to talk with us. My name is Gerardo and I will be conducting your interview. I have been given the pleasure of hearing a great deal of important details about you and your family - but I would prefer you open up our interview by sharing a few details about who you are, what you do, and your beautiful family. Tell us a little bit about Aiden.
Jose: So Aiden is 3 ½ now. The first sign of allergies, was when he was younger, his skin would always get red. He ended up being diagnosed with eczema. Ever since he was young, he had to go to sleep with gloves on his hands because he would scratch himself until he bled. We had a scary moment when he was two. He scratched his private area so bad, that he bled through his underwear. Since then, we haven’t been able to sleep one night without having to worry about him.
Jose: He was eleven months old, when while staying with his grandmother, after eating oatmeal, we noticed that he started to have a reaction. We realized that he might at that time, have an allergy. His skin test came up with so many allergens that even his doctor could not believe it. We followed up with some blood work a couple months after. The results were high. This is when it became very scary for me. Up until that point, for me, food allergies were food allergies. I worked in the food industry before, and I knew the importance of changing your gloves, and other protocols; but not what could be the end result. As someone who didn’t have any family members with food allergies, I didn’t understand how severe it could be.
Gerardo: Thank you for sharing your experience.
Jose: To be honest, even after the diagnosis, I didn’t fully understand the severity. Family members and others might say things like, oh but he could have a little eggs-that is just something the doctor said. My lady, as a mom, she would get frustrated and would say, no way. I followed her lead. What really opened my eyes to the severity is the information that I received from food allergy social media groups. I started learning about other families’ experiences. It was at that point, that I realized, holy crap; this is serious. I didn’t even know the term, “ anaphylaxis”. This helped me to realize, that I really had to step up, learn and advocate as well.
Gerardo: I’m glad that you were able to find social media groups for support. How was it with your extended family?
Jose: My family in the Dominican Republic, culturally, my family was naïve to the idea of the severity of food allergies. They would encourage us to give Aiden, “just a little bit”. – After learning all that I learned, I had to educate them and explain to them the severity. I had to explain to them, no you don’t understand; he can actually die from this. When he was older, they did a food allergy test with peanuts. He was not even able to ingest them. Hives would appear as the peanuts touched his lips. He had a similar reaction to a few teaspoons of milk. He threw it up right away. Looking for some answers, we went to a different allergy specialist. Then COVID came, which put a delay on everything. We did all the appointments virtually, until we were able to go in person. The blood work showed that his sensitivity was so extreme, that it was too risky to do an allergen test.
Gerardo: Thank you for sharing. You remind me that sometimes our cultures are so centered around food, and what we learn from media, such as movies and television; never portrays the severity of it. Food allergies are almost always treated as a comedy. Sometimes, in our families we are just taught to give the child some Benadryl and they will be good. The reality is that is not always the case. It is not until you are dealing with a severe reaction your child, or yourself, that you come to understand the severity of it.
Jose: Yes, for instance a cookie, may or may not contain peanuts, that is where reading the label comes in. Many of us are ignorant to the importance of reading the product label. I have a lot of respect for allergy mothers out there, I’ve learned a lot from them. It breaks our heart when Aiden can’t have something that he wants.
Gerardo: Can you tell us a little bit more about what Aiden’s allergens are?
Jose: So, he is allergic to peanuts, all tree nuts, with the exception of coconut. He is allergic to eggs, cow milk, oat milk, sesame, codfish, salmon, mustard are the main ones; it’s a long grocery list of the things that he is allergic to.
Gerardo: I understand Aiden has eczema. How does he have to treat it? And how has it affected his life?
Jose: We have tried every cream that you could think of, such as hydrocortisone. He showers at minimum twice a day, then we out on the creams, and Vasoline. We can’t just put him to bed, it is a whole ritual with the shower and creams, otherwise, he will just scratch himself severely. We are always worried about permanent marks and scaring.
Gerardo: How has this affected your family?
Jose: With the exception of eggs, we do not keep anything in the house that he might be allergic to. We can’t for example, just order from the ice cream truck like other kids. We cannot go to a restaurant without speaking to a chef. It has affected our travels. During October 2020, we had a scary moment when flying into Mexico and running into Hurricane Delta. During talks of evacuation, our concern was Aiden. Would there be food for him? We evacuated to a university. The only thing that they had that he could eat was fruit. My lady started to cry at the thought of being stuck here, for two or three days, without food for Aiden. I ended up booking a flight, that ended up being cancelled. Thankfully, things eased up with the storm the next day. I was concerned because we were surrounded by kids with foods that Aiden is allergic to, dropping things on the floor, like M&Ms. We had to keep Aiden secluded for his safety.
Gerardo: It has to be tough as a parent, to watch your child not be able to eat or enjoy things like M&Ms and ice cream.
Jose: Oh definitely, when we found out that Aiden was allergic to bacalao (codfish). I had to take a moment. I started to cry. This is something that we eat a lot of in our culture. I decided that at that point, if I had to give up things so that he is not in it alone, I’d do it. Thank Goodness, that my lady has been amazing at finding alternatives for food that we could eat, such as flour to bake cookies and other things. She has made his life so much better, when he is in our hands. The scary part is when he has to leave us.
Gerardo: That is a scary thought. You can’t always control things when he is not around. How is your extended family now, that they are more educated on Aiden’s food allergies?
Jose: Now they know to ask. They wont just give him anything to eat. They are aware to read the labels.
Gerardo: Can you tell us a little bit about your journey with Beware Allergy and food allergy advocacy?
Jose: I started Beware Allergy in December to spread awareness and promote food safety. I have a couple of shirts that say, please don’t feed me, or I have food allergies. It is basically a way to help parents make others aware of food allergies, without actually having to say it.
Gerardo: Amazing
Jose: We use the Instagram page to raise awareness, showcase other’s journeys with food allergies, and we decided to open up about Aiden’s journey with food allergies. It is a space to share with others and learn from others about alternatives. It creates a sense of community, and a place to go to when you have questions, and to help others when you have answers. We want to create a space where we help others that are going through the food allergy challenges, and also a space for others who don’t know anything about it, to learn. I may start writing short story books in the future with Aiden about food allergies.
Aiden joins in the conversation.
Gerardo: Hey Aiden, how are you doing today?
Aiden: Good
Gerardo: I like your shirt. It says, “Please don’t feed me, I have food allergies”. Awesome!
Jose: Can you tell us about your food allergies?
Aiden: Yeah
Jose: What are you allergic to?
Aiden: Eggs. I am allergic to cowmilk.
Jose: What else?
Aiden: I am allergic to peanuts and sesame and mustard.
Gerardo: Wow! I think it’s so good that you know what you are allergic to. Good job Aiden! As the world has been plagued with Covid-19, how have you managed with your family? How have you been able to keep your family safe, particularly from his allergens?
Jose: At first it was scary. There was a lot of panic shopping. His stuff is specific. We had to stack up on his things. In regard to appointments, we did everything virtually with the exception of blood work. Even before covid, he knows to watch his hands. He knows not to touch his face. He has a little swing set outside, so that he can have some outside time. One positive way to look at it, is now people are sanitizing a lot more, which is a plus for those of us with food allergies.
Gerardo: Before we go, are there any parting words of wisdom you would like to share with parents with children with severe food allergies and parents without children with food allergies and or asthma?
Jose: For those without food allergies; try to educate yourself before giving out advise. Try to put yourself in the shoes of parents with children with food allergies. Elijah’s story shows the seriousness. Google anaphylaxis. Learn about epi-pens. You never know where you could come across allergens. Be Aware. Be supportive.
If you would like to find out more about Be Aware Allergy go to https://bewareallergy.com