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