By Eleanor Garrow-Holding
December 5th is a day I’ll never forget. On this day 17 years ago, my dad was laid to rest; and 16 years ago, 19-month-old Thomas had his first anaphylactic reaction to pecans at a family birthday party. It was the scariest day of my life (I’m sure many can relate). I thought I was going to lose Thomas, too, while 5 months pregnant with Anne. No parent should lose a child; sadly, through the years, I know too many that have. Thomas was not in my eye-site and onto the food table. After ONE bite of an English toffee bar with crushed pecans, he went into anaphylaxis after 30 seconds. Hives, coughing, watering eyes. My cousin was the hospital administrator. She lived 2 miles from the hospital. She called ahead and told the staff what Thomas had eaten and his symptoms while my mom drove us to the hospital. Upon arrival, the ED team was waiting outside for us. It was SEVEN minutes from that ONE bite to the ED entrance.
Thomas was completely unrecognizable to me. Hives from head to toe; eyes now swollen shut; lips swollen; coughing; gasping for air. The ED doctor took him from my arms. They administered three doses of epinephrine, antihistamine, prednisone; initiated heart and lung monitors; and oxygen per mask. It was about three hours later that Thomas started to look himself. They admitted him to the Peds Unit overnight for observation to rule out a possible biphasic reaction. All the while, I have many questions and worries going through my head. What is happening? We have no family history of food allergy! Is Anne going to have food allergies? I knew no one with food allergies! I knew nothing about food allergies despite my healthcare background! I was beyond scared and felt so alone!
Thankfully, Thomas had a restful night; I did not. We were discharged the next day and went to our pediatrician for a prescription of epinephrine auto-injectors. Next, I called Lurie Children’s to schedule an appointment for testing and diagnosis. After skin and blood tests, Thomas tested positive to all tree nuts, peanut, and sesame. My world was even more rocked! Although, I learned that day that I was NOT alone! There were many support groups in Chicago and the suburbs, but there were none in our suburb. So, from December 5, 2004 on, I started educating myself and my family on everything about food allergy and anaphylaxis.
I resigned from my job because I didn’t trust anyone to care for Thomas except his Dad, my Mom, or me. I traveled to attend support group meetings and meet other parents with whom I could identify. I met amazing parents along the way who mentored me; educated me; supported me, etc. My mom, a nurse, was one of them. She was our #1 supporter! When I was ready, I started a support group in the county where I lived because there wasn’t a group. Families needed support as times were different then. No online groups. Meetings were in person with guest speakers. Educational materials from various organizations; samples from allergen-friendly food companies; epinephrine trainers were made available for the group members. Parents loved the in-person meetings and socialization. It was great meeting other families who share the same life experiences.
At age 3, Thomas was diagnosed with Eosinophilic Esophagitis (EoE) and asthma. After a two-year elimination process of certain foods, his triggers were milk and wheat. Another new navigation for us as milk and wheat are in so many foods. Adding asthma meds was another new path for us. We continued to educate and advocate for ourselves, and we managed!
I definitely found my passion the day Thomas had his first reaction. I knew I wouldn’t let his food allergies define him or hold us back from living life. I wasn’t going to let fear take over; nor was I going to allow anyone to instill fear in us! Living with food allergies IS manageable. It’s all about the education! I taught Thomas, now 17, how to advocate for himself at a young age, and he has always been his best advocate! I’m SO proud of him! Anne learned at an early age to be an advocate, as well, and I’m so proud of her. Living with food allergies is all they’ve ever known. Siblings are affected, as is the entire family. It’s very important to not lose site of your family.
We started to dine out. We started to travel again. We flew, even internationally. Thomas went to school. We had hurdles to jump over the years. Believe me when I say hurdles, but we made it work. Over the years, we’ve gone through oral food challenges, 21 endoscopies and food reintroductions (d/t EoE, but is now in remission), and skin/blood tests. Just like many of you. We’ve come a long way over the years. Thomas is in remission for EoE, which is rare, but now has milk and wheat back in his diet. He outgrew peanut, sesame, and almond. We still avoid all tree nuts. There is ALWAYS HOPE! ALWAYS!
PLEASE KNOW, whether you’re newly diagnosed or still trying to manage and navigate, the support and education are there for you and your family. The inspiration and empowerment are there for you. It’s OK to be scared. It’s OK to not be OK. It’s OK to cry. Tears are your strength, not your weakness! It’s all normal. You’ve got this! YOUR voice always matters! IF you do feel alone, don’t have anyone to talk to, are feeling frustrated, or need support...please call me, email me, text me! I AM HERE FOR YOU! Always remember, we are all in this TOGETHER! ALWAYS be kind to one another!
I thank God everyday for my mom’s support and advocacy for Thomas and for others in the food allergy community. I thank God and my dad everyday because they were watching over Thomas on December 5th. May they always keep watching over all of us!
I love you to the moon and back, Thomas, and am so proud of the young man you’re becoming! Keep living your dreams!
About Eleanor Garrow-Holding
Eleanor Garrow-Holding, is the President and Chief Executive Officer of Food Allergy & Anaphylaxis Connection Team. She has worked, educated, and advocated in the food allergy community since 2004. She was inspired to start this work after her son, Thomas, was diagnosed with life-threatening food allergies to tree nuts, peanuts, wheat, and sesame; eosinophilic esophagitis (EoE) triggered by milk and wheat; asthma; and environmental allergies. In December 2015, Thomas had a food challenge with wheat and passed. He is no longer IgE-allergic to wheat. After a 3-month trial with wheat and another 3-month trial with milk (post wheat) in his diet and upper endoscopies, he has also outgrown the wheat and milk triggers for EoE and is in remission from EoE as of July 2016. As of October 2019, Thomas has now outgrown peanut, almond, sesame, and brazil nut and continues to avoid walnut, cashew, pecan, hazelnut, and pistachio.
As CEO of the Food Allergy & Anaphylaxis Connection Team (FAACT), Eleanor provides leadership, development, and implementation for all of FAACT’s initiatives and programs, including Camp TAG (The Allergy Gang) – a summer camp for children with food allergies and their siblings that Eleanor founded in 2009. Eleanor has a Bachelor of Healthcare Administration degree from Lewis University in Romeoville, IL, and worked in hospital management for 16 years in Chicago and suburban Chicago prior to working in the nonprofit sector.
After Thomas was diagnosed in 2004, Eleanor established a food allergy support group in a southwest Chicago suburb, Parents of Children Having Allergies (POCHA) of Will County, focusing on education and advocacy; chaired the FAAN Walk for Food Allergy in Chicago in 2007 and 2008; was awarded the FAAN Muriel C. Furlong Award for Community Service in 2008; and advocated in the Illinois state legislature on food allergy and Eosinophilic Disorders (EGID, EoE) issues. Thanks to the efforts of Eleanor and other patient advocates, legislation to ensure insurance coverage for elemental formulas was signed into law in 2007 and legislation establishing food allergy management guidelines for Illinois schools was signed into law in 2009.
Eleanor joined the Food Allergy & Anaphylaxis Network™ (FAAN) in 2009 as Vice President of Education and Outreach, where she oversaw educational initiatives, all food allergy conferences, the Teen Summit, Camp TAG (The Allergy Gang) now under FAACT’s umbrella, a Teen Advisory Group, support group development, and more. She advocated for the Food Allergy & Anaphylaxis Management Act (FAAMA) in Washington, DC, with her son Thomas as part of FAAN’s Kids Congress on Capitol Hill and also advocated on Capitol Hill for the School Access to Emergency Epinephrine Act. Eleanor served on the expert panel for the CDC’s Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs and was a reviewer for the National Association of Education (NEA) Food Allergy Book: What School Employees Need to Know. Eleanor conducted numerous radio, television, and print interviews on food allergy issues and wrote articles for Allergic Living and Living Without magazines. She presented at national and regional conferences about food allergy management in school and restaurant settings and educated personnel in schools and school districts across the country on food allergy management in schools and continues to do so with FAACT.
In 2013, Eleanor joined the Cincinnati Center for Eosinophilic Disorders (CCED) as Senior Specialist of Program Management at Cincinnati Children’s Hospital and Medical Center. There she led day-to-day clinical operations, clinical research projects, program development, marketing, and development.
Eleanor has and continues to educate employees from numerous food industry companies and entertainment venues about food allergies, such as McDonald’s Corporation, The Hain Celestial Group, Mars Chocolate North America, all SeaWorld Parks, and more.
Leading the charge at FAACT, Eleanor and the FAACT Leadership Team provides the education, advocacy, awareness, and grassroots outreach needed for the food allergy community. Eleanor serves on the DBV Technologies Peanut Allergy Patient Advisory Board, the National Peanut Board's Allergy Education Advisory Council, Sea World's Allergy Resource Team, St. Louis Children’s Food Allergy Management & Education (FAME) National Advisory Board, Association of Food and Drug Officials (AFDO) Food Allergen Control Committee, and The EDGE Teen Center Board of Directors. In August 2015, Eleanor was inducted into The National Association of Professional Women's (NAPW) VIP Professional of the Year Circle for her commitment to healthcare and nonprofit industries. FAACT is The Voice of Food Allergy Awareness.
You may reach Eleanor at Eleanor.Garrow@FoodAllergyAwareness.org.