Mom creates a support system for food-allergic families 00:00

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Dimensions of Health Allergic, ostracized and afraid

Mom creates a support system for food-allergic families

When Lisa Rutter’s son Evan was diagnosed with a peanut and tree nut allergy, she and her family faced bullying and loneliness. That’s when she decided to do something about it.

Did You Know? Tap to expand
Black children have significantly higher rates of shellfish and fish allergies, and higher odds of wheat allergy, than white children. Source: Journal of Allergy and Clinical Immunology: In Practice

Evan Bellatone 
Because they often go unseen, food allergies are considered a hidden disability. And yet food-allergic children and their parents can face a world of fears—fear of exposure, fear of a bad reaction, and, often, a fear of pressure to fit in from friends and family who don’t always know what’s at stake. In 2010, a study from the Mount Sinai Medical Center found that 35% of children over the age of 5 experience bullying as a result of their food allergy. For a disorder that affects 32 million Americans, this is a big deal. 

Lisa Rutter is the mom of a food-allergic kid named Evan. Ten years ago, Lisa found herself shocked and unprepared for her son’s diagnosis. She went on to educate herself and eventually launch a support network called the No Nuts Moms Group. As Lisa says, protecting her son became her number one priority, but advocating for food-allergic families became her calling. 

Lisa Rutter
When Evan was first diagnosed, it definitely rocked our world and turned it upside down. It was definitely life changing. It was in 2011, he was three years old. And he had occasions where his eyes would swell or he would be throwing up projectile vomit. We had a lot of occasions that should have been like warning signs. But I wasn’t in tune with it. I didn’t know anyone with food allergies. So it just wasn’t on my radar. Eventually, I started seeing a new pediatrician. And when I told her his history, she told me right away that I need to have him tested immediately. So she referred me to an allergist. And that was the beginning of our journey and a wake up call. They looked at me and they said, he’s allergic to peanuts and tree nuts. And they told me straight up he could die. 

And right then and there, I was like a deer in headlights, they pulled out the EpiPen to show me what it was, I had never seen one. I left there in tears. It was, it was a lot, a lot to take in. 

Lisa Rutter and her son Evan, who was diagnosed as food allergic 10 years ago. (Photo courtesy of Lisa Rutter)

The pressure that families go through when they first discover food allergies, it is so life changing, I don’t think people really understand it’s almost like grieving a death. Food is such a big part of our culture and our celebrations. It’s such a big part of our life, people don’t really realize it until they have food allergies. So when I say the grieving thing, they’re kind of like, oh, that’s a little dramatic. But it really is, you go through phases of food allergies, where you really are kind of grieving. Everything changes. I was lucky, I had an allergist that told me straight up, your kid could die from this. But that does not happen a lot. There’s pediatricians and allergists, unfortunately, that do not give these families the necessary information that they need to know. So when they leave that office, some of them think it’s not that big of a deal. And then unfortunately, I read tons of stories, I have a memorial on my site, I keep track of the tragic deaths. They just didn’t know how serious it could be. And unfortunately, a lot of them didn’t have EpiPens, or they just didn’t take it serious or they went 20 years without having anaphylaxis. So their guard has gone down. And then that one tragic bite. And that’s it.

Bullying, when it comes to food allergies is, is a big problem. It happens amongst grownups and children. Because kids, other kids just don’t understand how harmful it is. 

One time, he couldn’t go to a friend’s party. He came to me and he told me that it hurt his feelings because the boy yelled across the school parking lot on their way out from school that it’s fine that you can’t come to my party, because now we can have peanuts and nuts at the party. 

In preschool, there was an instance when I got into it on the playground with a mom. I think it was over cupcakes or cookies, just something totally ridiculous, in front of children. And I left there crying my eyes out. 

So my son had a hard time in preschool, but I don’t think he really understood it was mostly me having a hard time fighting with those other moms. The cupcake moms, I like to call them. It was like the end of their world if you took away anything from their kid. God forbid they don’t have a cupcake. And then as I’ve you know, gotten older and gotten to learn how to handle myself a little bit better, I definitely deal with those situations much better.

Bullying and food allergies is a big issue. I mean, I’ve read stories and I’ve heard from other parents where they use food as a weapon to taunt other kids. Throwing milk at them, throwing cheese at them, wiping peanut butter on them. It’s serious because if that kid goes into anaphylaxis, that’s a lot to deal with. And then to be taunted about it. It’s very scary for them. And I would definitely think that that would leave a lot of lifelong fears in them. I know some kids that have experienced anaphylaxis that actually are afraid to eat. It gives them anxiety, it scares them. 

So when he was diagnosed, I was in Michigan with no friends, no family, because all my family’s in Cincinnati. I was just starting to like do playdates with other moms that I just met randomly. And it was uncomfortable. I didn’t feel comfortable saying hey, can you not serve that at this play date? Did your kid have peanuts? You know, I didn’t feel comfortable broaching that. So I kind of just started to isolate myself. 

But I was sitting on the couch and I was saying I cannot find any support groups. I cannot find any other moms that have kids with food allergies, I felt so alone going to these playdates and not connecting with these other parents. I wanted to start NNMG Food Allergic Families, formerly known as No Nuts Moms Group. I was looking for other kids, for my son to connect with. So it started out as a playgroup, for moms and children with food allergies. And absolutely, you couldn’t bring any peanuts and tree nuts to these events. So it made everybody feel comfortable and we were able to all connect and then it just eventually evolved. I started having food-free Easter egg hunts, I started having food-free Halloween events. We started having moms night out. People would connect and have playdates, and feel safe and comfortable. And I just started building lifelong bonds with a lot of these moms. And then it just kind of evolved. There were other people from other states asking me, how do I start a group? And I was like, well, why don’t I help you start it. So it started with Orange County, California, after Michigan. And then I just kept getting request after request. 

We’re all Facebook based. And it’s going on 24/7. Anybody needs help anytime, you can always find an answer on there.

I believe the group has moved the dial in awareness a lot. I mean, we have groups all over the United States, we have a group in Australia, we have Canada, we have one in the UK. So we’re now nationally recognized. 

The thing that has surprised me a lot about this whole food allergy journey is it definitely ended up being something that I was very passionate about. And I wanted to continue to help other moms. And now oh my gosh, I have people all over the country that I really feel like they would open their door to me if I needed something. So I really feel like the food allergy community has such a strong connection. I’m good friends with people from all over the place that I’ve never even met in person. So I think that’s what surprises me and amazes me is just how there is a lot of compassion and a lot of connection out there in the food allergy community.

For me, I think this whole journey, what I would like people to know, for me and my family is I have definitely learned I’ve learned a lot more I’m more compassionate to other people. 

I mean, does it really matter if you don’t have a certain treat in the classroom? When you look at the big picture, I mean, the kid just wants to fit in, he wants to be with his friends. It shouldn’t matter if you know they’re missing a cookie or a cupcake or they can’t pack a certain snack. It just doesn’t matter. There’s more things in life that are more important. Our children are so important. So that’s what I would like people just to try to be more compassionate and understanding. You don’t know what’s going on with everybody and it’s just one little thing that could make that makes me feel so much better about sending her kid to school if people would just be a little bit more compassionate and more understanding.

Evan Ballantone
You can learn more about Lisa’s work supporting food-allergic families at NoNutsMomsGroup.weebly.com 

For iPondr, I’m Evan Ballantone. 

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Episode Allergic, ostracized and afraid