This is going to sound harsh, so be ready. But what is it going to take for Americans to wake up and realize that life threatening allergies are NEVER GOING AWAY (insert loud frustrated voice) and the sooner we realize this and work together, we can end these senseless deaths. Two teenagers recently died from food allergic reactions and this is simply tragic. My heart breaks for their families. I can’t imagine their pain, it is too large begin comprehending. Its these two words that I am fighting with: senseless deaths. How do we effectively stop this?
Last week Virtyt Kelmendi, a high school freshman aged 14 years old, passed away from an allergic reaction. In a public letter to his school community, his family explained what happened after he ate a bite of his friend’s fried chicken that contained wheat as they thanked everyone for their support while their precious son was in a coma before he passed. Their grace and poise is heart wrenching as they share their feelings. I am humbled by their words. Below is a You Tube video Virtyt created and several of his friends have posted their messages of grief. It is heart breaking to know that young people are grieving this week over the loss of their vibrant friend.
In March, Thirteen year old Brandon Dixon died after eating a snack given to him by a school employee that contained peanut. Epinephrine was delayed and his tragic death has left his family devastated. His mom explains in this New York Post article, “Mom Says School Fed Her Allergic Son a Lethal Does of Peanuts.” that she is suing the school. To make matters worse, Brandon was to be a bone marrow donor to his brother. Tragedy layered in tragedy.
Two young men full of life left this earth due to food allergic reactions. Our food allergic community has many questions regarding the specifics surrounding their deaths. We’ll never learn those details. BUT, what we are witnessing is a break down in food allergy management and a horrific failure within our educational system and the management of life threatening allergies at school. This disease will not disappear. ALL OF US, schools, restaurants, grandparents, friends, coaches, etc., need to come to grips with reality and accept that allergies can be life threatening, allergic reactions preventable to a large extent and they are simply real.
This dysfunction leads me to believe that the serious problems lay within the general public knowledge about anaphylaxis and life threatening food allergies AND caregivers. I understand the pain that Brandon’s mother is going to face being involved in a law suit and applaud her strength to hold her son’s school accountable for their devastating actions. I pray for her strength to endure legal proceedings as she fights for all school children to be protected and for the disease to be properly understood.
Accidents do and will continue to happen. It is the actions that are from lack of knowledge and ignorance that we need to impact. I just want to scream out, lets get real: food allergies kill and we can stop death by simply accepting this fact and taking a few actions. I just don’t understand what it is going to take to get through this dysfunction between knowledge, science, medical advise and action? My heart goes out to all of the parties involved in the deaths of these two young men. I can’t imagine their anguish and I pray they find peace.
I commit to working harder so that these boy’s deaths will save lives. Actually, I sent the link regarding Brandon’s death to my daughter’s principal and asked him to remind his teachers and staff that during this last very hectic and fun week of school, everyone needs to remember all students with 504 plans and food allergy protocol. I explained that my daughter’s teacher shared a nut ice cream with the classroom last week and thus violated our 504 plan. My concern is not my daughter, who handled the situation beautifully, but why are teachers are not following protocol and are willing to endanger students? When did this become acceptable? I understand an accident or something forgotten. I look forward to hearing the response. Brandon is already saving lives starting today.
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One of the hardest things I find about managing both life threatening food allergies and asthma is talking to others. I hate to be the one that might be perceived as demanding, pushing or for asking too much. What I now know, fourteen years later, is that honest, clear information presented with kindness works!..
Thank you for sharing these horribly sad stories, Caroline. Our LO’s preschool also had a lapse in protocol last week, when a child was given wheat accidentally during snack. They ultimately gave him an epi pen and called 911 (he required additional epi at the hospital) and is fortunately ok. This was the first time a student at the school required epi or a trip to the ER, so our hope is that the entire school community (teachers and parents) will now better understand the severity of food allergies.
– Mark (Los Angeles)
I’m sad to hear that a child had a frightening situation, but also happy to hear that they did ultimately receive epinephrine. We can all hope that this preschool walked away stronger and learned the importance of immediate administration. I really hope that all parents now have a better understanding the severity of life threatening food allergies! I think it is very hard for people to grasp this since our kids look great and participate in life pretty darn well. It’s tragic that we have these stories to share, but it is important that we do share so that we all can learn together. Stay safe!
thank you for sharing this! I think every allergy parents worst nightmare is that they go to school one day and don’t come home because of food 🙁 my heart goes out to both families! It’s devastating !!
Lyndsay, You are so right! After almost 15 years of living with food allergies, I still kiss my kids goodbye in the morning and say a prayer we’ll be back together that afternoon. I just can’t imagine what these parents are going through right now.
my stomach is sick reading this and the attached links. i have a 3-year-old son and live in poland. he is severely allergic to dairy and nuts. everyone asks when he will go to preschool. i tell them never. it’s so much responsibility for a child to know his allergies—but other children have no idea. and, in poland, they have nuts and dairy everywhere and don’t think twice about allergies///kids with them. my heart breaks for these families. what great losses—and i pray for all of us out there fighting the battle to keep our kids safe. it’s a minute by minute day by day battle that just can’t ever be stopped. heartbreaking. frightening. no words. rip, sweet boys!
My only child Sergio Alexander Lopez died June 26 2014 after eating a Vegie taco in McAllen, TX and asking 3 times if it contained any Peanuts products. Within 10 minutes his throat closed and he flatlined. He was brought back and survied 9 hours in a coma. I moved from Harlingen TX to Austin TX to be near the capitol of Texas to lobby for a law that Resaurants need to list the top 8 Allergens. I got a bill number SB2058 but didn’t get a hearing. Texas house is only open 5 months every 2 years. Once this law passes my next battleis to have Epi pens available in all Restaurants in Texas. I do this in the honor of my son Sergio Alexander Lopez(24 years old). Once I get laws passed in Texas I will work on them to be Nation wide in the U.S. I have every Friday off and I wil be going to schools throughtout Texas educating them on Food Allergies and on the Law I am trying to pass. Hopefully they will go home and tell their parents and help spread the word that Allergies Kill. I also plan to have 3 run/walk charity runs next year to get the word out about the law before the Nov 2016 when Texas House opens up again. My son had 3 part time jobs, was gettting ready to graduate in Mechanical Engineer, played 4 instruments (bag pipes, cello, guitar and keyboards) and had 2 bands (Vatican Beach and Christ Hair). As you see my son was living Life and it is so SAD that he had to leave this Earth so early because he had alot to contribute.
Belinda,
I am heart broken for you and can not begin to understand what you are going through. I will keep you, your son and your good work in my prayers. Please email me and I will try to contact you too regarding your legislative work. Our voices are needed. Your son will saves lives. I’ve spoken to TX legislators before and your legislature is like ours in Nevada, we meet every two years.
Thank you over and over for your love and energy of your son and all of the people with life threatening food allergies. You could have chosen to not speak out, but you do. For this, we are forever grateful.
May your son’s memory be eternal.
Caroline
Thank you for sharing these stories. they are absolutely heartbreaking to read (as is your son’s story Belinda) – but please, please please everyone – make sure if you have food allergies, that you have epinephrine (Epi pen, Auvi Q, Twinject or Allerject). If you have not been prescribed one, find out why not. If you have, be sure to always carry it with you. And ask your doctor for an emergency action plan so you know when to use it.
Virtyt’s situation was described as an asthma attack but might very well have been anaphylaxis – in either case, though epinephrine might have made a difference.
I recently toured the school that my son will attend for kindergarten next year. He does not have a food allergy, but my 3 year old does (egg and all tree nuts). Since he will be going to the school in 2 years I was curious and I asked about the policy for epi pens and was told that epi pens are stored in the nurse’s office which is several buildings away from the nearest classroom. In this school, only the nurse is trained and authorized to administer the epi pen. What happens if she is on her lunch break, attending to another child, or for whatever reason away from her office? In an extreme case, a child could die within 1-3 minutes of ingesting an allergen. Since allergies can be unpredictable and reactions can vary greatly, we have no idea what a child’s next reaction will be like. I was very nice and calm when I asked my questions. The administrator was aloof and dismissive. She asked me if I was so concerned about an “unlikely exposure” why I don’t home school him, I don’t know what it is going to take for schools (not to mention airlines, restaurants, etc.) to take food allergies seriously. Is the inconvenience of safety worth a child’s life? I would say absolutely. Caroline, I am happy that I found you and appreciate the work that you’re doing to bring awareness to this.
Katie You asked excellent questions. Because I had Epi pen always at my son’s schools but because the Nurse was gone and it was after school they didn’t give it to him. He had stayed after school for Math Competion in 6th grade and was given a candy with peanuts. Ask the question what if the Nurse is out to lunch or it is after school and they are staying for school activity?? Ask those questions.
Thank you for this post.
Great website…
my son and daughter both have peanut allergies…My almost 6 year old daughter recently tried out her Epipen, her allergist just prescribed the Epipen, she previously had a Jr. Epipen, she weighed 49 lbs at the doctor visit. After the ambulance ride we spent about 2 hours at the Emergency Room.
Have you read all the FDA recalls for peanut found in cumin spice powder? It’s been going since last year.
http://www.fda.gov/Food/RecallsOutbreaksEmergencies/SafetyAlertsAdvisories/ucm434274.htm
Tom
Hi Tom,
Yes, that cumin recall still has me on a edge a little bit and thanks for sharing it. I’m sorry to hear you had an ER visit. Too, I’m sure that was scary, needless to say. I’m assuming all is well now and your family has recovered? For me, when ever we experienced a reaction, I always needed some regrouping time. Again, thank you for joining the conversation and sharing.
Thank you for asking, my daughter is fine now. She did not have a reaction, maybe she was trying out her Epipen, as she had just seen the allergist demonstrate. We hadn’t put it out of reach yet.
Here’s another good article regarding cumin adulterated with peanut:
http://www.foodqualityandsafety.com/article/the-cumin-scandal-accidental-or-fraudulent/?singlepage=1
The Cumin Scandal: Accidental or Fraudulent
“The ongoing recall of cumin and cumin-containing foods due to undeclared peanuts or almonds is almost certainly the result of purposeful economically motivated adulteration (EMA), food safety experts believe.”
Good that everyone is fine. That’s our goal right?