Posted July 2014 – A year ago this month, Natalie Giorgi tragically died of an anaphylactic reaction to peanut. Her family and friends have been devastated – and her death caused an outpouring of sympathy in the food allergy community across North America.
Everyone with a child at risk of anaphylaxis could relate to the loss – and to the senselessness of a maddening disease that can rob us of a bright and caring 13-year-old who could light up a room with her smile.
Natalie had been with her parents Louis and Joanne Giorgi and her three siblings at a family camp outside of Sacramento. On the evening of July 27, Natalie took a bite of a Rice Krispie treat that she thought was safe. She told her parents that it tasted “funny”, and that she spat it out. It turned out the treat contained peanut, her allergen. At first Natalie felt fine, but she later succumbed to a severe reaction that even epinephrine could not halt.
But out of tragedy, Joanne and Louis Giorgi are working today to bring a ray of hope and light in their daughter’s name.
They speak to Gwen Smith, Editor of Allergic Living, to describe their newfound roles as advocates, the launch of the Natalie Giorgi Sunshine Foundation, and of their wish for Natalie’s story to make a world of difference in public awareness of the seriousness of food allergies.
Q. You mentioned to me that the food allergy community has been very supportive. Has that helped at all?
Joanne Giorgi: Yes, and we’re so appreciative and moved by other parents. We are buoyed by those who thank us and we are guided by knowing that Natalie would want us to do our best to make sure that people understand that this is a disease, that children are suffering with it in higher numbers than has ever been the case, and that we have an obligation to treat it as such, and to give it the focus and importance that it needs.
Louis Giorgi: The emails we get, they say things like ‘my grandparents are carrying auto-injectors’, ‘teachers at school are paying more attention, classmates are paying attention’. Hopefully, that is making things easier and safer for kids with food allergies.
Q. I think the whole food allergy community is wondering: how is your family doing now?
JG: You know, I have four beautiful children, I just have three here with me and one who is not. Those three other children still need our love and our time and our attention. They are a blessing, and they are what gets us out of bed every day.
But our family is not the same. And I think that anyone who has lost a child would understand what that means. So we have tried to figure out a way to honor Natalie, and that brings us some peace on a day-to-day basis.
LG: I think at first, you’re just dealing with the situation, but then you come to realize that people are paying attention because of Natalie’s story. It got families to pay attention to their children’s [food] allergies, parents meeting with their allergist. Grandparents are going in to the allergist to hear it for themselves. It seems like the safety net has been thrown wider because of Natalie.
We’ve had feedback from our friends that their allergists are saying Natalie’s story has led people to start coming into their offices and getting new EpiPen prescriptions and asking for a [management] plan, and asking for literature. We’ve heard about patients being much more compliant, they realize this is very real. And that’s where Natalie’s story garners attention – it is very real, it is a story that should never be repeated.
Natalie with her mom, Joanne Giorgi.
Q. Could you explain how the Natalie Giorgi Sunshine Foundation has come about?
JG: When the discussion of whether to create a foundation in her name came up, both Louis and I thought ‘yes’ because Natalie was an amazing kid – she truly cared about other people. Natalie was born at 29 weeks and was smaller than some of the others, and she was always out there, helping the other kid. She really got that we do, as human beings, have a responsibility to look out for one another.
As well, Natalie understood her allergies, she was so good about managing them, she knew what it was to be a kid with food allergies. Creating a foundation to share her story in the hopes of raising awareness and educating people and hopefully someday finding a cure, those are exactly the things that Natalie would have been so behind.
LG: Natalie was always very good about her allergies, but she also thought we should be able to do better than having to sit at a table at lunch on your own, or everyone having a dessert that she couldn’t have. She’d asked over the years: ‘Why can’t it be easier?’
With all these great people we’re working with, we can help be part of the solution and making it easier and safer. That’s where this foundation came from.
Q. You two have also joined the advocacy for California’s bill SB 1266, sponsored by Senator Bob Huff. It would ‘require’ – rather than just allow – public schools to stock epinephrine for emergency use. Did you seek out the involvement?
LG: We’d reached out to thank Senator Huff for putting forward this bill. And when we met with him, he asked us to get involved and that’s how that happened. [He mentions allergist Dr. Kari Nadeau and others also giving important support to the bill.]
It’s now through all the committees except Appropriations. Hopefully, that final push will happen and California can follow some of the other states and make epinephrine more accessible in schools – and perhaps then, that will move forward to restaurants and public places in general. One step at a time in the process. [Editor’s 2015 note: The bill is now law.]
Q. Joanne, you lobbied for this bill in front of a Senate committee. That can’t have been easy.
JG: I felt very much supported by Senator Huff’s staff, but I’d never done anything like that. A year ago, we led a very different life. Now at this point, I’ve testified there [before Senators and media], we did the segment on the Today Show and now we’re talking to you.
These are not things I would have gone looking for. But they gave me the opportunity to tell Natalie’s story. And I was able, on Natalie’s behalf, to ask them to help protect other children in our public school systems here in California.
It felt really good, very empowering to know that I could hopefully be doing something that could have a positive impact on somebody’s life some day. While I hope that nobody has to use an EpiPen, it feels good to know that maybe now, in the event of an emergency, a school is going to have it there.
Next page: Anaphylaxis as a public health issue; questions from a tragedy