Roots: I grew up with my mom and two sisters in Amarillo, Texas and spent my summers with my Dad in Addison, Texas. I am named after my mother, Deborah, but all of my family calls me by my middle name, Rae. After graduating from Amarillo Community College and spending a year in Utah, I moved to Denton to finish my journalism degree at the University of North Texas. I moved into a 200 square foot duplex and fell in love with Charlie, the boy next door. We moved to Austin in 2006 and married in 2007. I call Austin my home and Colorado a close second.
Family Life: Charlie and I have an amazing son, Turner. He has my surname. I wanted to use a family name and Furd, Garfield and Murdock just weren’t making the cut. Turner was the best fit and I wouldn’t have it any other way.
“Charlie, Turner and I camping with our VW Bus named Fillmore. We spend much of our free time camping, hiking and being outdoors. Our goal is to take Turner to all of the State Parks across Texas. We’ve taken him to 25. One day, we’d like to get Fillmore running in tip top shape, so we can drive up to Colorado for one of Turner’s doctors appointments. It’s the journey, not the destination that we look forward to.”
“But out of limitations comes creativity.” Debbie Allen
“Change is not something we should fear. Rather, it is something that we should welcome. For without change, nothing in this world would ever grow or blossom, and no one in this world would ever move forward to become the person they’re meant to be.”
The Best Advice I’ve ever been Given:
“Keep on pushing! Don’t take no s—t. And never, never, ever let me hear any s—t from you that you can’t back up.”
“Behold the turtle, she only makes progress when she sticks her neck out.”
Both quotes from my Dad, Rick Turner.
Something that most people don’t know about me: I’m currently writing a memoir about my summers living with my Dad.
Turner harvesting carrots in the family’s backyard garden
If I were to draw a picture of my three-year-old little boy, it would start with his towhead, his deep blue eyes and an exhilarating smile. He’d have a Ninja Turtle, a combine harvester and a monster truck all crammed into his small hand because he cannot leave the house without all three. Aside from wearing a cape, Turner would be barefoot, shirtless, pantless and sporting his favorite superhero skivvies turned around backwards because he says, “Mom, I can’t see their faces, if they are on my booty.” Right in the middle of his chest, I’d draw a heart bigger than Texas itself. He’d have my dimples, my father’s chin and my husband’s triangle toe. He’s perfect in every way.
Now imagine that I told Turner to help Mommy color his inside parts. He’d choose red, his favorite color, and scribble erratically from side to side just as any child his age would do. It’s fridge worthy. Again, perfect in everyway. On the outside, he looks completely normal, but if you look at his insides, you’d see that the scribble marks show that something is completely wrong. He has an invisible and incurable disease called Eosinophilic Esophagitis (say: EE-oh-sin-oh-FILL-ick Ee-SOFF-a-JIE-tiss) or EoE for short.
What is Eosinophilic Esophagitis?
EoE is a rare and chronic disease that occurs when there is an increased number of eosinophils causing inflammation in the esophagus (the tube connecting the mouth to the stomach). An eosinophil (say: ee-oh-SIN-o-fill) is a type of white blood cell that fight off parasitic infections. They are not normally found in the esophagus. Eosinophils are the superheroes of our bodies. However, in patients with EoE, those superheroes or eosinophils get some bad information about who the bad guys are and instead of attacking parasites, they start attacking the esophagus. The eosinophils cause injury to the tissue in the esophagus which causes food impactions, vomiting, severe reflux that does not respond to medication, failure to thrive, abdominal pain and feeding refusal.
“I teach (Turner) about managing his disease by showing him where food comes from and by him cooking all of our meals with us.”
What causes Eosinophilic Esophagitis?
Food. The one thing that is designed to go down an esophagus, nourish a body and provide complete satisfaction for the three-year-old hangries is the thing that causes my son so much pain and discomfort. As of today, Turner cannot tolerate any products that contain dairy, eggs, soy, wheat, gluten, sesame seeds, tree nuts, buckwheat, peas, corn, peanuts, coconut, beef, watermelon and oats. As of two weeks ago, we had to add sunflower seeds to the no list. If you are counting, that’s 16 foods.
Road to Diagnosis:
Turner was diagnosed with EoE at 15 months old and I’m grateful that we figured it out so early. Others are not so lucky. I cannot imagine having to take away foods from a child who already knows the joy of tasting a fresh baked croissant or the pleasure that comes from eating a dipped cone from Dairy Queen on a hot summer day.
I breastfed him for one year and throughout that time, he had bouts of severe eczema across his body. Our pediatrician assured us that things were fine and figured he had some food intolerances. As we started introducing foods to him around 7 months, we noticed things started changing. He spat out foods, had bloody stools, his eczema worsened and had an anaphylactic reaction. A few minutes after consuming eggs, his head swelled up so large that it looked as though we had pumped helium into his mouth as to inflate a balloon. We did blood work to test for more allergens and everything we tested for came back positive for a food allergen. Even after eliminating those top 8 foods and trying a regiment of reflux medications the more food we introduced, the worse it got. After his first birthday his health rapidly declined. He’d lost almost 2 pounds, he was vomiting 4-5 times a day, had just as many bowel movements and would stare off into space in a lethargic state. I knew something was wrong.
Deborah holds Turner’s hand while waiting for him to come out of anesthesia after getting his second endoscopy on his second birthday
Finally after meeting with an allergist, he suggested that we see a pediatric gastrointestinal (GI) doctor because he suspected he had EoE, a rare disease he knew nothing about, but had heard about at some point in his career. Upon arrival at the GI, we discovered that the only way to diagnose and check for EoE is through an endoscopy and biopsies of the esophagus. My husband and I held our son’s tiny hand as he slipped off into a state of unconsciousness as the doctors checked for some disease we could not pronounce. It only took 15 minutes for the doctors to confirm it with the visuals of the endoscopy. He had deep furrowing, scar tissue already building up, and strictures up and down his esophagus.
Days later the biopsies confirmed the diagnosis. The doctor gave me a couple of websites www.apfed.org and www.gikids.org, samples of some amino acid formula, suggested we try some more food elimination, and highly encouraged us to hire a nutritionist to help us find alternative foods to those already on our “no” list. Over the course of the next year, our world was flipped upside down.
In those websites, I found resources to help guide us through the road ahead. I discovered recipes for severely restricted diets, advice for communicating our needs to caregivers/family members and an amazing team of doctors at the Gastrointestinal Eosinophilic Disease Program at Children’s hospital of Colorado. Most importantly, we’ve found a supportive online community of now 4000+ people across this world who manage this disease. I am so thankful for my online EoE community and Austin Families with Food Allergies, a local support group. I love our supportive family and friends too. We live knowing that there is no cure, but together we are stronger. I am grateful for the foods Turner can eat because I know that there are always others praying for what we have.
25 Texas State Parks down!
Living with EoE:
- In 2013, we were at the doctor’s office, therapist, specialist or pharmacy 173 times. That’s one trip every 2.1 days.
- We have never been able to take Turner to a restaurant without him having a reaction to the food that they have served him. We stopped eating out as a family over 1.5 years ago. We cook ALL of our meals at home and we LOVE experimenting as a family.
- We stay awake at night wondering how Turner will ever get to experience college like we did. It’s hard to imagine our own experience without pizza, keg parties, dorm room food, late night trips to IHOP and a last minute snack from a vending machine just before class.
- Dum Dums are the ONLY candy that Turner can enjoy safely because they do not contain any food proteins. For some kiddos with EoE, who are not in remission, Dum Dums are their only safe food.
- Food trials, followed by a biopsy and endoscopy are the only way to determine if a food is safe for someone with EoE. Food allergy testing does not accurately indicate whether a food is safe or not for EoE.
- After eliminating 15 foods and following a strict regimen of medications, Turner is in remission as of his last hospital visit. We are hopeful that the next visit will be the same.
- I know more now about ingredients and cooking than I ever imagined. My husband and I truly enjoy finding creative ways to feed our family.
Follow our journey at www.sneezyt.wordpress.com or follow our facebook page https://www.facebook.com/groups/sneezyt/ to get more information on EoE, find recipes or learn what it’s like to be the Mom of one amazing superhero. We’d love to connect with other families in the area who have EoE, because together we are stronger.
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Photos by Catherine Sanderson
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