Our Team Shares A Passion For Creating Community

I knew nothing about food allergies despite my background in healthcare administration. He was covered in hives from head to toe. His eyes were now swollen shut. His lips were swollen, and he was coughing constantly and gasping for air. A doctor took him from my arms and laid his small body on a hospital gurney. Emergency Department staff gave Thomas three doses of epinephrine plus an antihistamine and steroids. They hooked him up to heart and lung monitors and gave him an oxygen mask. About three hours later, Thomas started to look himself again. I had so many questions and worries going through my head. We have no family history of food allergy! Is my new baby going to have food allergies, too? Nobody I knew had food allergies or a child with food allergies. I was beyond scared and felt so alone. Thankfully, Thomas had a restful night.

You Know Whats Coming Next

Next, I called Lurie Children’s Hospital of Chicago to schedule an appointment for allergy testing and diagnosis. Thomas tested positive for all tree nuts, peanut, and sesame. I learned that we were not alone in this new world of food allergies. Many food allergy support groups are around Chicago but none were in our area, so I started educating myself and my family about food allergies and anaphylaxis. I resigned from my job because I did not trust anyone to care for Thomas. I traveled to attend support group meetings and meet other food allergy parents. I met amazing people who mentored, educated, and supported me during my food allergy journey. My mom, a registered nurse, was our biggest supporter. I started a food allergy support group in the county where I lived. Families really needed that support. Meetings were in person with expert guest speakers. Parents loved socializing with families that shared the same life experiences.

Life Is Just A Breath Away

I would not let food allergies define Thomas or hold us back from living life, and I wanted every family to have that same opportunity. It’s all about the education! For every challenge we faced, I knew thousands of other families were going through the same thing. No one should have to make this food allergy journey alone. We have team members spearheading diversity initiatives and outreach to underserved communities of color, working with local advocates to pass legislation, and growing the community of support groups for people with food allergies. Every person on our team shares a passion for creating community and engaging that community for the common good. I taught Thomas how to advocate for himself at a young age, and he has always been his own best advocate. I am so proud of him! When one member of the family has food allergies, it affects the entire family. Thomas stayed in school and graduated high school this spring. Thomas outgrew his allergy to peanut, sesame, and almond. We still have to avoid all tree nuts. My message to food allergy families is that you are not alone. These connections keep me going every day, knowing that there are always going to be new families facing new food allergy challenges.

Keep Moving Forward

We are all in this together. I share her goal of keeping us alive and thriving with food allergies and am so thankful her organization exists. It helps people of all ages, all over the world, feel confident and informed. Next, let’s meet Sarah Cronk. It’s been wonderful to watch Sarah over the years evolve into who she is today and will be moving forward. Instead of a living room, we had a classroom. This is a refrigerator. During the summer months when Charlie and I were in elementary school, our family hosted Rain or Shine, a makeshift summer school led by Charlie’s therapists, where neighborhood friends came together in our basement for games, activities, and snacks. Our house was usually brimming with young people having fun together. The family’s quest to ensure Charlie’s maximum participation and inclusion at home, in school, and in extracurricular activities was woven into our everyday existence. For several years, the formula we created worked. Charlie’s growth and social development exceeded everyone’s expectations and we were all relatively happy. Over time, however, as Charlie and I grew older and entered junior high, creating socially inclusive opportunities proved to be more challenging. It’s another to attempt to orchestrate friendships for a teenager. By the time we entered high school, social inclusion had become elusive. Charlie is extremely smart, and with a few accommodations he handled the academic demands of high school without much trouble. He stopped wanting to go to school. A family, we were flailing. Then something unexpected happened. Within weeks, Jared convinced Charlie to join the high school swim team. Our family did what any grateful family would do. We thanked Jared over and over and over again. After all, like Jared, I was fully capable of extending simple invitations. A cheerleader at the time, I created a new cheer team at my school and invited students with disabilities to join. Five students with disabilities ranging from Down syndrome to autism and five students without disabilities cheered on the Pleasant Valley Spartans at home football and basketball games. Within a few months, our roster overflowed, we had a waiting list, and families were relocating into our district in hopes of securing a spot for their child on the team. I knew it was time to think bigger. It was time to bring my idea to schools and students outside Iowa, to start extending more invitations. In 2009, at fifteen years old, I started Generation Spirit, a national nonprofit organization dedicated to creating and tangibly supporting inclusive spirit teams in schools nationwide. I set a goal of generating 100 new teams. Once again, the family dining room became Command Central, but this time for a new purpose. Armed with only a ream of Generation Spirit letterhead and the unbridled audacity of a teen on a mission, I penned letters to one hundred schools inviting them to get involved.