Natalie Giorgi…

If you are a parent of a food allergic child, you probably already know who Natalie Giorgi was, and every detail surrounding her tragic death July 26th from an allergic reaction to a rice krispie treat. If you don’t know her story, read and watch the news clip here. I won’t go into all the details, as I think watching Natalie’s mother retell her 13-year-old daughter’s death in tearful angst is enough. Enough, I hope, to send ANOTHER wake-up call to anyone out there who questions the seriousness of food allergies.. a wake-up call to well-meaning parents who still insist on fighting food policies in classrooms that keep food allergic children AND teens safe. Accidents can and do happen. And they will continue to happen and innocent children’s lives will be at risk until we can 1. find a cure or 2. successfully advocate and get the message out that food allergies are dangerous and can kill.

Honestly, it’s very difficult for me to even talk about Natalie’s death, and watch her mother’s plea on TV to educate others about how a peanut allergy took her daughter’s life. Because no matter what is said about it, the reality is, this woman’s daughter is gone, forever. She watched her daughter dance. Then she watched her daughter get violently ill. Then gasp for breath. Then she heard her daughter say “I’m sorry” before she ultimately died after three epinephrine injections that were SUPPOSED to save her life, failed. THIS MOTHER WATCHED HER DAUGHTER DIE FROM SOMETHING SHE ATE. Can you imagine? The innocence of a 13-year-old girl just having fun on a camping trip with family and friends, only to end up dying because she took a bite of something that was made with food that could kill her. Can you imagine, just for a moment, what this mother, father, siblings, extended family, and friends are all feeling?  I have tried to imagine, and my heart breaks in two. My world would be shattered. Please pray often for this family.

So it’s the end of August, the beginning of the school year for children across the country. It’s a tough time for many parents who are sending their children to school with life-threatening food allergies. They must go in every year to review food policies in classrooms, snack lists, and stock nurse’s medicine cabinets with life-saving medication. They must sign up as the resident “snack mom” and “field trip chaperone” every year, in order to ensure their food allergic child is safe and feeling included in his or her own classroom. They must have meetings with their child’s teachers, principal, and school nurse about policies and (hopefully) Section 504 Plans, all designed to keep their kids safe. They also must endure the stupid and ridiculous comments and rants from some parents who howl at the thought they won’t be able to send in certain foods to class anymore because it’s dangerous for another food allergic child to be around. It’s tough all around. No matter what grade, or what age your child is, you’re always starting from scratch with new teachers, new classes, new everything.

I do believe things are shifting in a positive direction. I had the opportunity to attend a summit sponsored (and full disclosure, paid for) by Mylan. This summit was an incredible opportunity to talk about everything related to food allergies with top FA advocates, bloggers and activists. We literally holed up in a room and tweeted live about the latest research, listened to an informative and engaging panel discussion surrounding anaphylaxis and epinephrine access at schools across the country, learned about public policy and legislative updates and also discussed Mylan’s incredibly successful EpiPen4Schools program.

I was truly blown away by the knowledge, passion and purpose displayed by everyone in that room. I am also inspired by the leadership at Mylan. They are committed to the food allergy community through helping schools get access to epinephrine as well as offer a $0-Co-pay Card to help patients get afford up to three EpiPen 2-pack or EpiPen Jr. 2-Pak cartons per prescription. (see here for more information). I am very proud of all their hard work on behalf of food allergy awareness.

Looking forward, there is still much work to be done on behalf of food allergy awareness in our schools and in our communities. With the new school year here, now is the time to schedule a 504 Meeting with your child’s school to determine eligibility. My former state in IL did and EXCEPTIONAL job in creating everything you need to get your school up to speed on food allergy policy including sample 504 Plans, sample classroom letters, sample food free classroom celebration ideas, etc. I am still trying to get my current state of CA to start drafting some of these important protocols, but it’s definitely a work in progress. Follow this link to get you started with the right tools.

 

Finally, I will be at three events coming up this fall and would love to see you there if you are in the area:

October 12, 2013 Bay Area FARE Walk/Run for Food Allergies in Memory of BJ Hom: I am honored and excited to be a part of this amazing day. I will be selling and signing books and a portion of proceeds will go directly back to FARE.

October 27, 2013 Los Angeles FARE Walk/Run for Food Allergies: SO excited to be back at this walk. We had a blast last year! I will be selling and signing books and donating a portion of proceeds directly back to FARE.

November 2-4, 2013: FABC: Food Allergy Bloggers Conference: This is an inaugural year for the FABC conference and am SO excited to be a part of an amazing group of speakers! Please see the website for ticket information and the schedule.

Enjoy the last days of August!!!! xoxo

13 Responses

  1. You’re right, food allergies are tough all around. As my son gets older (he’s 4 now) I’m experiencing that more and more. I finally read the news article and watched the interview with Natalie’s parents. I put it off because it was as heart wrenching as I knew it would be. I just wish all NON-food allergy parents would watch that so they know where we’re coming from.
    Have fun at the FARE walks and the FAB Conference-my husband thinks I need to attend, but I can’t decide!

  2. I HATE food allergies and what Natalie felt as she was going breaks my heart. To say I’m sorry, as if it was her fault that her own family and friends chose to serve a treat with peanut butter knowing about her allergies. I am praying for her parents and siblings. I have so much fear for my allergic children and my stress level this time of year reaches a high. I am so grateful for people like you, Kelly, and others at the summit who are trying their darnedest to make it a little easier for us.

  3. I haven’t watched the video yet because I break down in tears everytime I see the link. My 4 year old starts TK in 2 weeks. Her school and after school care is not nut-free and though the school has never had to deal w/ a severe food allergy, they seem willing to do anything they can to help. Because of you and other resources, I have the strength and tools I need to advocate for my child. I can’t wait to meet you at the Bay Area event. Thank you for all you do for us!

  4. My heart breaks for this family! It is my worst nightmare. My 12 year old daughter was diagnosed with multiple life threatening food allergies at the age of 10 months. She is allergic to peanuts, tree nuts, eggs, and milk. The older she gets the more frightening it becomes because she wants her independence. We had a scare just this month in Disneyworld. We go to Disney almost every single year for vacation because they have always done such an exceptional job preparing allergy safe meals for our daughter. We went to the same restaurant at our Disney resort that we had been to the morning before. Placed the exact same order, same protocol was followed by us to ensure a safe meal. Her pancakes were brought to her and after only three bites she knew something was wrong. She was having a severe allergic reaction. We later found out that the chef had not written her allergies down and he also handed off her order to another chef that put eggs in her pancakes. Thank God we had our medications with us and she is alright now. But unfortunately she is terrified to ever eat anywhere else besides home. She has lost her trust in the one place that she felt safe. It was another reminder to us that you can never, ever, ever let your guard down! This happened on our daughters 12th birthday. She is almost the same age as little Natalie. We have to protect our children! Thank you for this blog post as a reminder to all of us!

    • Wow, we had the same thing happen to us at Animal Kingdom, Orlando. We ate at the same restaurant we’ve gone before and my 7 year old daughter broke out. :(

  5. Love your articles. My daughter is Ana to peanuts and tree nuts and I am so sick of the ignorant parents who think allergies can only cause rashes and make such a huge issue about their kids not being able to bring PB to class even though they know it could kill my child.

  6. We just returned from Disney World, where my 3 year old son had his first reaction serious enough to cause him to need his epi pen, when they gave him the wrong “allergy safe” bread at Epcot. It was Natalie’s tragic story that was running through my head when I made the decision to give him the epi pen. My heart breaks for this family. It is very scary that a simple mistake after years of painstaking care to keep her safe caused her death.

  7. There are no words for what happened to Natalie Giurgi!! She had the right medication in their hands, a doctor dad, parents by her side, they recognized the problem… it just has shaken me to the core b/c it seemed like she had all the right tools to fight a food allergy accident. And it reminds me how unpredictable & dangerous food allergies are and how there is still soo much we don’t know :/

    But then I have already had a family member who as asked numerous times to cook for my family see this tragic event and say “I just didn’t realize how dangerous food allergies could be.” It was a awake up call to me that even people who have family members with severe peanut allergies (for YEARS!!) need to be hit with this hard truth! Thankful for Natalie’s parents for keeping her death in public view for awareness of food allergies!!

    Thank u Kelly!! And do u have a resource for the procedures for a food allergy reaction from a trusted and knowledgeable medical perspective??

  8. I don’t understand why FA parents don’t put their time any effort in learning why the world is so toxic to their children? Is it GMOs in foods, antibiotics fed to cows, BPA in plastic and can liners, chemical fertilizers, or some combination of the above ingredients. I would be far more empathic if some legitimate thought were out into why rather than wanting to ban peanuts and tree nuts from every public facility.

    • My daughter has severe allergies to dairy and eggs. I can tell you that I DO wonder and research WHY she has these allergies. I seemingly did “everything right.” I ate organic, whole foods during pregnancy. I nursed. She has eaten nothing but homemade, organic, whole foods since she was born. I’m a Health Coach specializing in digestive disorders, so I have background in this area. I believe that allergies start in the gut and that much of this has to do with disordered gut bacteria, likely due to antibiotic use (my generation typically received antibiotics for everything as kids), processed foods, chemicals of all kinds that disrupt our natural gut flora, etc. I’m actively working to repair my daughter’s gut bacteria, which she received from me during birth.

      BUT I don’t know why any of that would you make someone more or less empathetic to the fact that a 1-year-old child has life-threatening food allergies. It’s nothing that SHE did… it’s nothing that I did, at least not knowingly. I’m not sure that anyone would look a child with cancer and say, “Well if you were spending your time researching WHY she has cancer instead of taking care of her through treatment, then I’d be more inclined to be empathetic.”

      FA parents are vigilantly ensuring their children’s safety. I think many of us ARE interested in the why and are actively working to help our children be as healthy as possible, but this doesn’t change the fact that we must be vigilant about their safety in the meantime. To suggest anything else just doesn’t make sense to me.

      • I have 1 year old TWINS. One has allergies to serious eggs and tree nuts. The other has no allergies. They were both breastfeed, gestated in my body at the same time, given the same bottles, cups, soaps, live in the same house with the same pollution exposure, and have always eaten the same foods. I did not cause one to have allergies by something I did / did not do. Their environment may or may not have caused one to have allergies, we don’t know. We need to do more twin studies. What I do know is that certain foods can kill one of my children. It is sad that I cannot eat what ever I want, or have any foods in my house and must restrict food around my child. But if keeps my child or any child from dying, I don’t think it is a sacrifice.

  9. Thank you for your article and for honoring Natalie and her family. My almost 6 year old Sammy has been showing signs of severe allergies since birth. She has skin, airborne and food allergies. It’s the food allergies that terrify me most. She is allergic to peanuts and all tree nuts, but also bananas and soy. Everyone refers to the peanut allergy, but these kids are allergic to multiple foods, and not just peanuts – it’s all nuts – and so awareness and education is of paramount importance. It takes JUST ONE BITE! And if one more person says to me, “Oh, she’ll grow out of it…” ARGH! Just a few weeks before Natalie died, my daughter had a violent and severe reaction, in a restaurant, to a chocolate croissant that we believed was nut free. Stupid us for trusting the world. The second she looked at me and made that strange movement she always does with her jaw, I picked her up and whisked her to the nearest restroom, knowing she’d be throwing up in seconds. I comforted her through violent vomiting, followed by incessant sneezing and all over body itching. I gave her Benadryl and settled her for a nap. Soon after, my husband emailed me the article about Natalie, and I almost haven’t stopped crying since. Natalie is our Angel who inspired my husband and I to become more vigilant about how we protect Sammy. We made an appointment with our Allergist and he informed us we have been “lucky.” Gut punch. We have been lucky. LUCKY we haven’t killed our daughter because we never give her epi injections. He let us know that we are to use an injector if we even THINK she has been exposed, and that we need to use it immediately. We were speechless. We had been managing her care incorrectly. We are so thankful that we are on a more informed track with an action plan in place that family, friends, school, etc has a copy of. I have several “Allergy Packs” made for her and notes on all our doors in our home reminding us to take her pack with us if we’re leaving. I am terrified for my daughter, but grateful that we are prepared to jump into PROPER action should the need arise. I thank God for the courage of Natalie’s parents to share her story and wish I could give them both a grateful and supportive hug. As I become a crusader for my daughter, I will have Natalie in my heart.

  10. Growing up in the 70’s and 80’s, I never heard of someone being allergic to peanuts or even met someone with such an allergy. This makes me wonder, are peanuts being harvested differently than they were back then? Are there different pesticides that have altered the protein that peanuts have? Is this a genetic alteration that is being passed down? In Dayton, OH, there is a school that does not allow ANY homemade treats to be brought in for parties or celebrations. They have a specific list of things from specific stores that can be brought in and everything is inspected carefully. I think all schools should have a policy like that. It’s sad that an era of homemade treats, bake sales and the like may be on its way out, but the lives of our children are more important.

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