Tears in Heaven….

Me with the beautiful Bay Area Walk organizer Sharon Wong!

Me with the beautiful Bay Area Walk organizer Sharon Wong!

I just returned from San Jose last night, where the Bay Area FARE Walk/Run for Food Allergy in honor of BJ Hom was held. This event alone raised nearly $120,000 for food allergy research and awareness. Over 800 families affected by food allergies attended the walk, and enjoyed presentations by CA State Senator Jim Beall, NBC News Bay Area Laura Garcia Cannon, and San Jose Vice Mayor Madison Nguyen. Steven Powell US Navy 1st Class Petty Officer sang an incredibly moving “Tears in Heaven”, as well as awesome performances by food allergy musician Kyle Dine, American Idol Season 11 finalist DeAndre Kamele Brackensick and many, many others. Brian Hom, his amazing and beautiful family, and all the incredible volunteers who made yesterday an enormous success deserve our deepest gratitude. As most of you know The Hom family lost their son BJ in 2008 from anaphylaxis, and Brian has devoted his time and life to raising money for allergy research and awareness. He’s a remarkable man.

I had the great honor to also meet many of the Bay Area families whose lives are affected by food allergy. One family in particular came over to my table where I was greeting families and signing books. As soon as I saw her, I knew exactly who she was, but she reached out her hand anyway and introduced herself and her husband as Joanne and Louis Giorgi. Oh my God, I thought. I MUST go over and hug her tight, from one mother to another. And hug her husband, as one parent to another. I thought, what could I ever say to a mother who lost her beautiful daughter just months ago? What do I say to a woman whose daughter’s last words to her were “I’m sorry” before dying right before her eyes? Her eyes….that’s what I looked through for the strength to say something when I didn’t know what I could possibly say to ease her horrific pain.

“I’m incredibly sorry”, I said to her. She looked so strong, so resilient, so brave. “Thank you”, she said, and admitted it was a tough day for her and her family. I looked over at her husband, who had the same look of heartbreak in his eyes. I looked back over at Joanne, and saw her own eyes well up with tears. I just had to tell her in that moment what was deep in my heart; that I am forever grateful for the courage she and her family have shown in educating others about what happened to their sweet daughter Natalie. That I can’t stop thinking about Natalie, and how her tragic story will inevitably save lives. The lives of OUR children. Right then I opened my cookbook to the photo of John, and said “this is my son John. He has the same allergies as your daughter. I know he is always one accident away from the same tragedy as Natalie’s. I’m scared, and heartbroken, because your daughter’s death reminds me to never forget what work MUST be done by the rest of us to raise food allergy awareness. As a mother, I am so DEEPLY sorry for what you are facing”. Tears, tears and more tears shared between two mothers.

With tears in our glassy eyes, I promised Joanne I will do everything I can to help her with the Natalie Giorgi Sunshine Foundation. I will work even harder to knock down doors in our schools to enact laws and policies in schools that will keep our food allergy kids safe AND included in their classrooms. I will use my voice to speak for those who can’t. I promised Joanne that we will never forget Natalie and what her life meant to all of us. It was incredibly brave of Joanne and Louis to be at that walk yesterday, in the company of so many families who struggle with food allergies. They were there yesterday to not only represent Natalie’s life, but to represent all of US.

The rest of US have a responsibility to Natalie Giorgi to use the voice within us. We must speak as loudly as we can for our children. We all have the ability to make a real difference in our schools. We mustn’t expect others to fight for us. We must do whatever we can to hold our children’s schools accountable. Schools are in the business for our children. Bottom line. I don’t care about extra paperwork, administrative hurdles or school politics that so many say are the road blocks to change. It is irrelevant to me. Our children’s well-being comes before all else. And most of all, don’t ever listen to someone who says to you, “Things will never change”. Or “You can’t”. Instead, say “I will”. We owe it to families like the The Giorgi’s, The Hom’s and The Shannon’s to NEVER GIVE UP on educating and raising awareness. May God Bless the angels in heaven who will guide us every step of the way.

Steven Powell US Navy 1st class Petty Officer sings – See more at: http://www.foodallergywalk.org/faf/help/helpEventInfo.asp?ievent=1061755&lis=1&kntae1061755=D51AEB04ABE840C796E7509D87AD7F93#sthash.mdra6c38.dpuf
Steven Powell US Navy 1st class Petty Officer sings – See more at: http://www.foodallergywalk.org/faf/help/helpEventInfo.asp?ievent=1061755&lis=1&kntae1061755=D51AEB04ABE840C796E7509D87AD7F93#sthash.mdra6c38.dpuf

15 Responses

  1. Thank you Kelly for an awesome post. I really needed that pep talk this morning as I am up researching like crazy for the knee deep battle I continue to fight to keep my kids safe and included at school.

    They had wonderful accommodations that I fought so hard for and with a new 504 coordinator and both kids moving up to new grades in new school buildings, that was all taken away. As it stands now, my son has not attended one day of school this year and my daughter has not gone to school a full week this year. It is beyond ridiculous how callous a 504 coordinator and school district can be over the safety and inclusion of their students. I am ready to pack up and move or home school but, I know it won’t help other children in our area, nor will it show my children how to persevere and advocate for what is right.

    My heart is shattered for these families who have lost children. They are each so very brave to keep fighting and advocating. I am so grateful for their strength! Thank you for being a voice for our children too!

    • Kelly,

      Thanks for your well written article. It touched the core of my being. As Ann humbly puts it down, we as parents of children with life threatening allergies rely upon the mercy of our individual school systems and in particular, upon the mercy of our school principal. I reside in the state of Virginia where the difference between guidelines for the management of food allergies at school from one county to the next are abysmal. While Loudoun Co. has guidelines with very well defined language, Fairfax Co’s are so vague that leave room to the wildest uncooperative imagination. Please let’s also remember the recent preventable tragedy at a school’s playground in Virginia that took the life of Ammaria Johnson at the tender age of 7 during recess time. While her passing became a part of the precursor for the Stock Epinephrine initiative at schools in Virginia, that is only one half of the story. The other half is the unspoken and unaddressed responsibility placed upon the people in charge at the schools, the community at large, and the parents. We as parents have to find the strength to educate others about the seriousness of this condition. We as parents need to persevere even when it feels like the world is against us. We as parents of FA children need to “come out of the closet” at our schools and as a united front, educate as we negotiate reasonable accommodations that include not only the physical, but ALSO the emotional safety of our children with FA. By default, the community at large can also learn to develop some empathy that we seem to have lost.
      By doing so, no child will be kept home from school due to safety concerns, no child would feel emotionally pressured to take a “forbidden bite” perhaps because for once they may want to feel like they “fit in”, no parent should have to go to the school cafeteria daily to ensure the safety of her child, no parent should have to be bullied by a principal, teacher or other parents just because they don’t believe that FA are to be taken seriously, or that children with FA have not only have the right to live, but also to live an emotionally fulfilling life.

      • Oh my goodness Tatiana I can’t thank you enough for these powerful words. I LOVED your line about parents needing to “come out of the closet” at our schools and stand in a united front. Could not have said it better myself. THIS is the change we need. And yes, that important thing called empathy. It’s time to regain it. Thank you for writing and press on!!!!

    • Ann thank you so much for you very kind and inspiring words. GIve yourself the space to grieve a little over these battles you personally must face when fighting to keep your kids safe. Don’t get too discouraged, this shall pass. And you will persevere and make headway with your coordinator and school. It’s so awesome and I’m so thankful that you are there fighting for your children and all the children in your area. Hang in there, you’re doing a great job. XO

  2. Kelly, I don’t know what was going on with your website yesterday, but I about had a heart attack when I jumped on to browse for a cookie recipe and couldn’t get to them. (We have your original baking book, but I’m so used to using your website!)

    Question: Is every recipe you’ve shared on your website included in one or the other of your books? I need to pick up the second one for sure.

    I tell you one thing: I’m going to cross-reference the recipes in the baking book with the recipes we love on your website (we use SO MANY of your recipes!) and make sure to print them until I purchase the other book. My husband said we need to put them in our fireproof safe…in all seriousness. You’re an important part of our happy allergy life!

    I’ve posted thanks on several of your recipes that we use most frequently, but really, thank you so much.

  3. Natalie’s tragic story paralyzes me and makes me want to work harder for my daughter both at the same time. Thank you for sharing the Giorgi’s bravery of showing up just months after Natalie’s death. I am so appreciative of parents like you, the Homs, and the Giorgis who work so hard for our childrens safety.

  4. Thank you for sharing this story. Not a day goes by that I don’t think of Natalie’s death and how my child could be taken by an accidental bite. God bless her family and you for everything you all do. Both of your cookbooks get good use in my small kitchen and I am forever grateful for having found the first one at my local library. Now, I will go to my room and finish crying.

  5. My heart goes out to these families. Bless you to all you are doing for all of us with loved ones with food allergies!

  6. Kelly – You are so inspiring as are the families of Shannon, Nathalie and Brian Horn. You are the one who inspired me to demand safe food for my teenager. Thank you – Heidi

  7. Oh my gosh! What an amazing walk day you had! Thank you for sharing about your meeting with the Giorgi’s (I can’t even imagine how hard it was for them to be there that day…). Thank you for saying to them what is on the minds of so many of us- their family sticks in our hearts and makes us want to do more, do better.
    Great post, Kelly!

  8. I can’t thank you ALL enough for your incredibly kind words of support, love and and inspiration. YOU all make me want to do a better job of getting the word out about our FA children’s rights so they can be better protected and safe. I was just at the first annual Food Allergy Bloggers Conference and and met many of you for the first time. I personally think I have the best readers in the whole world. LOVE you all. XO Thank you.

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