Food. It’s something we as a society enjoy. We center entire celebrations around it. Delicious delicacies dance on our taste buds as we laugh and dance with our friends. You’ll find it at important political deliberations, celebratory meals for our heroes and birthday parties around the world. Food surrounds us.
But what happens when those delicious delicacies wage war on our bodies instead? It begins an endless battle…
In 2008, we were blessed with a beautiful little girl who we named Abby. Her gorgeous blue eyes looked back into mine and I knew nothing would ever be the same. I would do anything for her. Little did I know how much she was worth fighting for. We brought her home from the hospital and three days later we would begin a journey we have yet to come back from.
There were signs in the beginning. She seemed uncomfortable breastfeeding. To my dismay, she wouldn’t take to it, so we began using infant formula. It didn’t help. She cried consistently as if she was in pain. She was profusely vomiting. Not being one to wait, I immediately took her to see her pediatrician.
The physician we had at the time rolled her eyes at me. I was a first-time mom. “Babies spit up. It’s what they do.” Well spit up maybe one thing, but projectile vomiting is an entirely different beast. We went back to that physician two more times. Each time I was brushed off or ignored. I was adamant on being heard. I knew something was wrong and no one could tell me otherwise.
Twelve pediatricians later, I found a doctor who actually listened to me. She wrote down my concerns and questions. Then she referred me to a gastroenterologist at a children’s hospital. It turns out I wasn’t just an over-protective, first-time mom. I was right. Something was wrong.
In October of 2010 my beautiful little girl was put under general anesthesia for her first of many endoscopies. After reviewing the biopsies, the doctors gave us her diagnosis: eosinophilic esophagitis (EoE). My husband and I were relieved to finally have a diagnosis. We went from relief to worry as our fingers swiped across tablets, phones and computers trying to find as much information as possible. We were on a roller coaster ride. If only we knew we were just about to reach the peak of the first drop.
The GI wanted us to immediately remove food from her diet and begin allergy testing. Abby has undergone every possible kind of food allergy testing there is. With the results not always being accurate, we were trying to find a needle in a haystack. She was also put on a steroid slurry mixture of budesonide and Splenda. After a year and a half, we switched children’s hospitals. We found one closer to home. Being closer to home meant less of a drive, and it also opened the doors for better treatment.
After our first visit we knew we had found the doctor for our daughter. He greeted her before us. He asked her questions and waited for her response, listening to every word. He asked her, “Abby, would you like to feel better? I can’t fix this, but I will try my hardest to keep you as healthy as possible. You’ll have to help me. OK? You tell me how you feel every time and I will keep it all in my notes.” He was true to his words. The first step of treatment was removing all of the top eight common allergies. An endoscopy would be scheduled to determine the severity of her EoE. This would be her seventh scope in just two years.
Unfortunately, the results of the biopsies were disheartening. She had failed to pass a clear scope with no counts of eosinophils in her esophagus. Her GI sat with us and went over all of our options. We could continue with the steroids, remove a few more foods and hope for the best, or we could eliminate all food from her diet. She would be strictly elemental formula which would be administered to her stomach via G-tube. At this point she was labeled with failure to thrive (FTT). I knew the steroids were only masking the cause, so we made the tough decision of going with a g-tube.
Abby was elemental for the first three months. She was healthy, thriving, happy and no longer felt the symptoms associated with her disease. My husband and I both agree, if we could go back in time we would choose for her to have a g-tube sooner. It was a game changer for her.
Slowly, we added foods back one at a time. Abby would have a scope after each food to see if there was any damage. For the first year and a half, we were able to add fruits and some vegetables back.
She has not added a new food in over a year.
Her health took a different turn in 2014. She became severely ill in just a matter of two days. I rushed her to the emergency room where she ended up being air lifted to the same children’s hospital where her GI was located. Abby had meningitis. Over the years, she has had several cases of pneumonia, strep and upper respiratory infections. During her stay in the pediatric intensive care unit, Abby was also diagnosed with immunodeficiency. Her immune system was almost nonexistent.
The immunodeficiency combined with her EoE was a new battle. Abby began to refuse food — including food we already knew was safe for her. After speaking with counselors at the children’s hospital, she began therapy for food aversion. It wasn’t the texture, taste, or look of food that kept her at bay. It was the fear. She was afraid of food. Abby knew what it felt like when her body rejected food and she no longer wanted to feel that way. I didn’t blame her. To be honest, I would probably feel the same way. The therapy was more of an outlet for her to express herself to someone other than a parent without judgement. It was the best decision we have ever made for her mental health.
Abby’s therapist has encouraged her to express her feelings whether in art, writing or even screaming into a pillow. I can’t imagine what it must feel like to be the only person you know with EoE and a g-tube. She has never met a child with EoE who has needed formula or a g-tube. I’m sure she must feel very alone in that sense.
One day I noticed she was intently watching her brother eat. She wasn’t upset by it, but more interested in what his food tasted like since she couldn’t have it.
He described it for her, and her eyes lit up.
She began watching cooking shows on television. Her number one love being “Master Chef Junior.” We watch episodes on repeat on our DVR. Her interest was in the judges. She loved to see how they commented on the different presentations, tastes and textures. Somewhere during those episodes, she fell in love with Gordon Ramsay.
She began cooking with me at home and her interest in food took off. She took notes when we ate. Everything was recorded. Sometimes we had to rank our meals from least favorite to favorite. Abby had an interest at home. She had a voice at home, but not in the outside world. She wouldn’t speak up for herself. Instead, she would deal with whatever the day dealt her, then she would come home and have a difficult time with the family. I advocate proudly for my daughter. Mother bear is definitely a title I wear proudly. I will “go to battle” for her in an instant, but when I noticed my voice was louder than hers, I knew we had a problem.
I spoke to her therapist, and we began encouraging Abby to speak up vocally. What we didn’t expect was her choice of actions.
She stayed in her room for two nights “writing stuff” to Gordon Ramsay and she asked us not to bother her.
On the third day, she brought a sheet of paper to my husband.
He read it over and told her it sounded wonderful. Abby wanted to mail her letter to him. I scoured the internet and could only find one address. I told her we would mail it, but I couldn’t promise he would get it. She then asked me to record her reading her letter so Gordon could hear it.
Abby is not camera shy. We have made videos before in efforts to raise awareness for EoE. To her this was no different. She sat down on a chair in her room and I recorded her reading the letter. It was the first time I had heard the letter. Only her dad had read it prior. I learned that day I was only an “OK cook.” We posted her video on Facebook and YouTube. Then we tweeted it to Gordon Ramsay. A friend of mine shared it again for me and the tweet took off. The next thing I knew, Gordon Ramsay was asking for me to contact him directly. I was screaming with excitement while Abby slept. When she woke up, the next morning we showed her Ramsay’s response. She was thrilled just to hear from him.
Abby was hoping for an email or possibly a letter with a recipe inside. What none of us expected was the hospitality of Gordon Ramsay and the Master Chef Junior staff. Abby was treated to a trip of a lifetime. We flew to LA to meet Gordon, watch a live recording and take a tour of the studio. But what made this trip the most memorable for her was the food. Ramsay and his staff took the time to learn what her safe foods were, how to read labels for allergens and what foods to avoid. They took the time to listen about her disease.
Then, they did something I have been trying to do for over eight years. Ramsay and his staff made her a delicious meal completely safe for her and she ate every. single. bite.
Gordon Ramsay personally served her and watched her take the first bite. The smile on his face was so genuine and sincere. He was just as excited as she was when she watched people eat. To our amazement, he had an apron made for Abby while she was there. She wears her master chef apron every day while she helps me cook in the kitchen. She still watches Master Chef on repeat. I don’t think her interest in food will ever change. Gordon Ramsay and his staff have cemented a love for food in her.
Even if she can’t enjoy it, she takes an interest in other people enjoying it. When she cooks her meals with me, she says it’s practice. Abby wants to open a “top eight allergen-free restaurant” when she’s older so people with food allergies won’t have to be scared anymore.
If you ask her why, she will tell you “No one will have to eat alone anymore. It won’t be scary. Everyone can be happy and safe.”
Her “war with food” isn’t over, but she is conquering it every day by not letting it control her decisions in life. She has her feet planted firmly in the ground and nothing is going to stop her. Abby is amazing. I’m so proud to be her mom.