Food Allergy Epidemic: A Breaking Point
I will always consider November 2014 as a breaking point for food allergy and anaphylaxis, the time when everyone who loves someone with life threatening allergies must come together and make a difference to fight back this epidemic. Three deaths due to food allergy and anaphylaxis in one month, three devastated families and communities, three lives tragically lost too soon. To add insult to injury, a school board member suggesting shooting children with food allergies as a solution to how to manage food allergies in schools. It is entirely possible that things will get worse, there will be more deaths, there will be more humorless punchlines but I have decided that this is a breaking point and it’s time for all of us to make a difference now before it’s too late.
Joseph DeNicola was 7 years old, from Staten Island, NY, had a severe allergy to milk when he went trick or treating on Halloween with his father, Anthony, followed by a pizza party with family and friends. Joseph had trouble breathing, his dad administered an epipen and rushed him to an ER where Joseph went into anaphylactic shock and cardiac arrest . According to his dad, he did not eat his allergens and the exact cause is unknown, possibly exposure via cross contact or airborne food allergens. On November 4th his doctors took him off life support and his organs were donated. He was beloved by his family and friends, enjoyed martial arts, and was named student of the month in October.
Chandler Swink, a 19 year old sophomore at Oakland University from Auburn Hills, MI, was aspiring to be a nurse and he had a life-threatening allergy to peanuts. On November 18, he went to his friend’s house where someone was baking peanut butter cookies. It’s unknown whether he ate a cookie or was exposed via airborne food allergens or cross contact but he had an allergic reaction. Chandler went to his car to inject himself with an epipen and drove himself to an ER. He was later found collapsed on the parking lot, where he simultaneously had an asthma attack, anaphylactic shock, and cardiac arrest. He was in a medically induced coma with a 2% chance of survival. His family made a difficult decision to take him off life support, and he died on November 26, Thanksgiving eve. Chandler was loved by his family and friends, but through the years he was taunted and bullied as “the allergy kid”, his family was blamed and criticized by other parents for their public school district’s peanut free policy. Yet despite these challenges, he maintained a positive and brave attitude and was awarded a full four year scholarship for university, where he wanted to study nursing.
Jaime Mendoza, a 16 year old boy from Milwaukee, WI, had a known peanut allergy and he ate a peanut butter cookie by mistake on October 15 because he thought the cookie was chocolate chip. He became short of breath in front of his friend and went into cardiopulmonary arrest (his heart and lungs stopped working) and his friend drove him to an ER. Hospital staff tried to save his life but he had substantial brain injury which was further complicated by pneumonia. He was given comfort care since October 22 and died on November 27, Thanksgiving day, with his parents at his side. Not much is known about Jaime except that he had a family who loved him and he didn’t carry an epipen.
Just Shoot Them!
During the November 10, 2014 Clawson School District Board of Education meeting, a discussion of USDA requirements about snacks that are sold at school raised the question whether those requirements apply to birthday treats. One member of the audience mentioned that there were many students with food allergies, about 1 in every classroom. Linda Grossmann, one of the board members, said, “Well, you should just shoot them!” and threw up her hands amidst laughter and giggles from other board members and the audience. A copy of the video was posted online on November 22 by the Honesty for Clawson Schools and it went viral because of the shocking and outrageous comments, including those “by Jessica Back about catering to these kids and the board president, Kevin Turner suggests putting all kids with allergies in one classroom.”
A school board member is entrusted to act in the best interest of students at all times, joking about shooting any child is in poor taste, let alone children with a federally protected medical disability. School gun violence and bullying are out of control, frightening, and cause havoc and heartbreak in communities. Because there was a huge outcry of protest, Linda Grossmann resigned under public pressure and the school board issued a statement that they were stunned and saddened by her comments. I have to watch the video again to see how does more laughter and comments reflect that sentiment. The video recording of the meeting demonstrates that the board sorely lacks awareness and compassion about students with life threatening allergies.
Hello, food allergy scoffers and skeptics! I’m talking to you!
What is even more troubling about the general lack of awareness is that there are those who excuse Grossmann’s alleged “joke” and believe that food allergy parents are overreacting. Scoffers and skeptics need to realize that food allergies are no laughing matter. 15 million people are affected, including 1 out of 13 children. There is no known cause and no known cure. Life threatening allergies can happen to anyone at anytime. Prompt administration of epinephrine increases chances of survival, but it doesn’t always work. Compassion is the only acceptable response. Read about people who are gone too soon due to anaphylaxis and see if you can develop a little empathy.
Everyone can help!
Precious children are dying from food allergies and someone’s hostile gut reaction toward children with food allergies is recorded. How do we respond to these horrific events? We must respond with compassion, a strong desire to advocate and make a difference. Everyone can help because everyone knows someone with life threatening allergies.
Have access to epinephrine: Always carry epinephrine in your pocket, purse, bag. Leave extra sets at school, at work, at Grandma’s house. If you are not the person with the prescribed epinephrine or a caregiver, you can help by encouraging loved ones who don’t carry theirs to start.
Know when and how to use epinephrine: Know the symptoms of an allergic reaction, when epinephrine is needed, and how to use it. Anyone can become allergic at anytime for the very first time, you can at least call 911 for them. You can learn by asking your doctor or taking a CPR first aid class which includes an anaphylaxis unit.
Always call 911 and go to the hospital via ambulance after using an epipen for emergency care. An epipen will provide relief and allow time for the person suffering from a reaction to get to a hospital for further medical treatment and evaluation. Sometimes people have a secondary reaction called a biphasic reaction which can be life-threatening. Be supportive, don’t let someone experiencing anaphylaxis go to an ER alone.
Prevent reactions by avoiding food allergens: Read and provide ingredient labels for foods. Be aware of cross contact. Avoid serving someone’s allergen, for example don’t serve foods with cheese around a person who is allergic to milk, put it away. Avoid using using allergenic ingredients in unexpected ways, such as peanut butter flavored rice crispy treats or brownies with a peanut butter center. Those who have allergies, don’t eat unless you can read the ingredient labels and leave if your allergen is present and there is no awareness about cross-contact.
Be inclusive, food allergies are no joking matter: This is when people with life threatening allergies need help, they need the people around them to be kind and compassionate about keeping them safe and included. Do not condone bullying or jokes about food allergies. Support food allergy management policies at work and at school.
Update: Clawson School District officials began implementing food allergy training with guest speaker, Gina Clowes of FARE during one of their work sessions. I am glad to see the progress.
What do you think about this series of events? How can we change how people respond to children with life threatening food allergies? What can you do to raise awareness? Share your ideas in the comments and let’s work together to make it happen.
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Sharon, thank you for this blog post!
Sharing this blog post with our school and/or church communities . . . with our extended families . . . with our own children is a great place to start! Those of us with tween / teens and young adults with LTFA need to try everything to impress upon them best practices for management and how to learn from allergy-related experiences — their own and others’. My heart breaks for these families and others who have lost a loved one to anaphylaxis. It is no joking matter.
In sorry for those impacted, but at what point is everyone going to say “enough!” Maybe your kid can’t participate in everything, all the time. All of the stories above involve people who may or may not have been exposed- I’m sorry but you have to take more responsibility if you are impacted by severe allergies and not rely solely on people surrounding you to comply. Our sons are members of a Cub Scout pack with over 150 kids and 120 families. We just got a new boy this Fall who has a peanut allergy- now we must change everything we do AND carry hand wipes to protect against this boy being exposed- all the time. Is that fair to the other boys? I agree with providing labeling and other measures- like allergy free areas In school, but there have to be limits…
I hear what you’re saying Bob, and it’s true- we can’t solely rely on those around us to be thoughtful and understanding of our children’s food allergies 100% of the time, and as a parent of a child with several life threatening food allergies I can assure you that we all understand that as we live it day by day. However, at the rate of food allergies increasing exponentially over the past decade, we have a responsibility as parents to teach our children how to be compassionate and caring to others with food allergies, as this is something they will surely encounter for the rest of their lives through friends, classmates and future co-workers. Instead of being annoyed or feeling put out by the Cub Scout pack having to make changes to accommodate a child with a peanut allergy, turn this scenario into a teaching moment for your sons and their friends that the changes being made could potentially save a child’s life.
I find it truly baffling that your comment on a post about three children who have lost their lives is about how hard it is for you now that you have to use hand wipes and not serve peanuts at scout activities! Are you serious? Think about what these families are going through!
And trust us – ALL food allergy families are NOT in any way relying on the rest of the world to keep our children safe. Clearly we can’t do that, even if we wanted to, as the world is full of people utterly lacking in compassion for their fellow human beings, including children – so we certainly cannot rely on anyone else and we don’t. This is a life we live 24-7, every minute of every single day and we cannot make a mistake EVER. All we ask is once in a while for people to try to do some small thing that helps make life a little bit less terrifying.
I truly hope that young scout finds a different more compassionate troop to join.
So what’s your solution? No one ever eats peanuts or dairy?
Calling three deaths, while all amazingly tragic to their families, an epidemic is not only factually inaccurate but demonstrates an inability to objectively examine what happen and what can be done about it.
It’s very sad that these People died, very very sad. But it’s not anyone’s fault. Unless you want to blame god.
I sat here for a little while reading your question. By the way, I am Joseph DeNicola’s mom.
So to answer your first question. Tell me if I am miscommunication your intent, your first questions is what is the answer. What are we to do to save a life. Correct. I always tell other parents that is the most important value we all can agree on, keeping everyone out of harm and having a great time and creating memories. Alot of parents that I grew up with, could not understand how my son was allergic, they had not been educated since it does not effect their day to day other than when they are will a group. A group, that might have food allergies, or heart problem or kidney issue or even the matter of temperament with dealing with this all in a large group setting is so hard on everyone. But it would be more so, if I knew I did something that might of harmed a child.
Now relating to your comment about related deaths you might want to go back to the article and click on the link “read about people whom have gone to soon” now sit and scroll down to the bottom, if you can take the time, since you have asked your questions and I am taking my time to answer them.
Again, your question is three deaths firstly, Joe, what is the value on your life. Would you trade places with my son.Lets talk facts now. You stated that deaths demonstrate an inability to objectively examine what happened? Well, Joe… The fact is my son died due to his allergen. It was and is the cause of death, by fact. See we value life, so we decided to give all the miracles that had been praying for us to still have him safe. We gave that gift by donating. I by fact had been told, the cause of death Joe.
Again your asked what can be done about it. Being able to understand what is happening to all of us, basically. Maybe have a great conversation of what you can do, to help. Not sure what you do for a living, but I believe you posted here since you have interest overall. I thank you for your concern by asking that question twice. We take precaution, we value lives. See that is what our children have learned and those values. Each day they have to depend on others to an extend, but we have resource to help along the way, but it only takes that one time, or that grease from the pizza that Joseph came in contact with and rubbed his face or mouth or eyes, see Joe, that is all it took Joe was that sever. We included him to no limit and everyone working to respect him, do you know why? Once you met him, your face just smiled.. He never harmed anyone, was a very gentle child, valued everything from the Milkyway to the earth to the animals around him, see he taught us alot, in only seven years. You know that feeling you get around some people that you just smile.. I am not saying that just because I am his mother… again that is a FACT.. lol.. 🙂
Yes it is very sad, that my son can no longer be here. I wake up each day and attempt to find a reason he was born with this illness, it was not anyone’s fault. You know the only answer that I can come up with. We had been blessed. We had been blessed that he taught us the values of others by his illness. I do believe he was blessed. He lived, for a purpose, each of us do, now I am attempting to face each day myself.. but I realized during the last few days I had left holding his little hand feeling his heart beat for the last time, he was a gift from GOD.. We where blessed, because he made the decision, through it all .. it was clear and felt.
Blessing and love to you..
Julianne DeNicola – Joseph’s Mommy…
Bob- you consider it unfair to the other scouts that they have to wipe their hands and can’t eat peanuts when they are around a child who has a life threatening allergy? Is it that big of a sacrifice to show a little empathy and consideration for a child with a life threatening allergy?
Omg- you carry hand wipes ALL THE TIME???? Dear God, the humanity!!! I can’t believe this child with a who has no control over this disease has the audacity to ask his fellow scouts to help keep him safe, help keep him ALIVE by carrying handwipes!!! How can the other scouts even cope with such a daunting task? And I imagine not being able to eat peanut products at scout events is pretty close to a major violation of their civil rights… and yes, I see how it changes everything you do, EVERYTHING the scouts stand for!
I am so glad, that YOU, Bob, are helping raise a new generation of scouts and helping them practice AKELA… you know: helping the Pack go, helping the Scout grow AND practicing GOOD WILL.
When your son and the rest of his awesome pack made their Scout Promise to do their duty to God and Country, TO HELP OTHER PEOPLE, and Obey the Law of the Pack… I’m sure they truly meant it, UNLESS the child has a life threatening disease, right?
Way to go, BOB! You are a shining example of everything the Scouts stand for…
Bob, I agree with you when you say ENOUGH! Enough of the sugar coated politeness! Enough of the lies and denials told to our society that GMO’s and Pesticides are not causing life threatening diseases and allergic reactions in humans. Enough of cold hearted people who think only of themselves and their own bottom line. Yes Bob, ENOUGH! It is only a matter of time until your family will be affected also. All of us will be!
I am Chandlers Grandmother, I do not care whether I am polite to someone who is cold hearted, and thinks only of themselves, I will fight for these kids and will fight people like you and others who have not a clue and do not care about others, only yourself. Because Bob, someone HAS to care and find out WHY! Why are deadly allergies up 50%, why are animals and humans dropping dead, how long before we all have something like this! How long Bob before your kidneys fail, or your kids are told they have it too! Wake up Bob!
Dear Judy, my deepest condolences to you and your family. Chandler’s story and last moments are so tragic and please know that the entire food allergy community stands behind your family as well as all the other families who mourn the loss of their loved ones. Please let me know how I can ever help your family. ~Sharon
Judy, my grandmother heart breaks for you. You are living the nightmare I am so very much afraid of. We have an 11 year old granddaughter, FA nuts, treenuts, sesame. Not a day goes by that I do not worry for her life – her life – her life. That is not a typo. Her life. I know you know what I mean by that statement. Chandler’s story is one that needs to be told – it needs to be shouted from the rooftops. Those who do not travel the path of food allergies must, at the very least, realize that food allergies mean so much more than hives or itchy eyes. They must understand that food allergies are killing children and young adults. We who are in this secret club that we did not ask to join and who are paying dues that include losing a loved one to anaphylactic shock must continue to fight for their lives. We must tell their stories over and over and over again. We must never stop telling their stories even when we feel we are not being heard. When I encounter someone like Bob who posted earlier my first reaction is anger; my second reaction is sympathy because being such a non-empathetic person must be difficult; my third reaction is to stop them short by asking them how they might feel witnessing a loved one experience anaphylactic shock. I would then describe it to them in great detail. You are very much in my thoughts and prayers, Judy. God Bless you today and all days ~
Great post Sharon!
In response to Bob:
My daughter with severe food allergies joined Girl Scouts in Kindergarten. Changes were made to include her, but those changes were minor, and included things like making sure the shared snack did not contain her most severe allergen, hand washing, teaching first aid skills, and table wiping.
I think that allowing kids with disabilities to be a part of Scouts is a great way to teach many of it’s principals such as first aid skills, citizenship skills, and leadership skills, as well as being a great way to teach Scouts how to be trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, brave, and clean.
Having a life threatening allergy can limit some things in a child’s life, but with a little kindness, friendship, courtesy, and a bit of extra cleanliness, they do not have to be left out of the Scouting experience.
I hope that your experience in welcoming this child into your Cub Scout pack will be a positive one for all involved. With severe food allergies on the rise today, learning to “Be Prepared” when it comes to food allergies will be important through college, and into the workplace. With the rate that food allergies are increasing, they may even be a part of your own family life someday. Wouldn’t you want your child, or grandchild to be included in Scouts?
In response to Joe:
Sharon does not seem to be advocating a ban on any foods. It seems to me that her solution would fit right into the Scout Motto of “Be Prepared”. Be prepared to help yourself in case of a serious allergic reaction, and be prepared to help others by knowing the signs of anaphylaxis as it is a growing health issue especially within the pediatric population.
Carrying wipes is such a small inconvenience to help keep other kids safe. Nobody is asking you non allergy parents to be 100% responsible for keeping our kids safe…believe me we spend days and nights planning out things to keep them safe such as packing safe food and writing allergy plans. If one small thing like using wipes would help save a child’s life why not do it?