Our daily struggle with childhood disease began when our Isabelle – “Izzy” - was born. Izzy would inexplicably have severe reactions to things ranging from environmental elements all the way to foods. Her reactions included rashes so severe that her skin would break down and bleed. She would vomit with such force that it would exhuast her.
We were convinced that Izzy was reacting terribly somehow, in some way, to food. Two brain MRIs, two stomach MRIs, many ultrasounds, three gastric emptying studies, a half dozen surgical scoping procedures and a couple of probing studies later, we got the answer.
Now three years old, our Izzy battles a nefarious and unpredictable auto-immune disease called Eosinophilic (eee-oh-sin-oh-fill-lick) Esophagitis (EoE) that makes many food and environmental proteins the enemy.
It’s incredibly ironic that the one thing that is supposed to sustain us can actually be the one thing that hurts our daughter.
If Izzy strays outside her extremely limited diet (no dairy, eggs, wheat, soy, corn, nuts, fish and most fruits and vegetables), her white blood cells attack. If she picks up a corn chip and eats it, her white blood cells attack. If she nibbles a little chocolate candy, her white blood cells attack. And when her white blood cells do attack, they strike Izzy’s digestive system, destroying her little esophagus, inflicting severe tissue damage and creating pain few can imagine, let alone bear on a daily basis. That is the nature of Izzy’s disease, which was only identified 10 years ago. For Izzy, there is no birthday cake, pizza or traditional holiday meals unless her mom, Kelley, makes something that meets the incredibly strict dietary restrictions Izzy requires.
Food is life. We need it. We celebrate it. Yet, in our family, food is treated dramatically different. Food is approached with caution.
Kelley and I must evaluate every single type of food Isabelle puts to her lips. It is constant diligence and it is exhausting. What most families take for granted in sharing a meal, our family has to read a label for ingredients, prepare it without cross-contaminating it and hope it won’t make Izzy sick. Trying to stop Izzy from the innocent act of wanting to eat something, anything, is excruciatingly difficult.
Food is about socializing. When we meet, we eat. When we gather, we eat. When we have fun, we eat. Everyone gets to enjoy the meal - except Izzy. She survives off a medical amino acid-based formula that provides nutrition. It provides no taste, no pleasure and no sense of fulfillment. It is a struggle for Kelley and me to explain to Izzy why everyone can eat except her.
The bad news is that I’m not done! Since Izzy cannot eat most foods, she hasn’t developed the necessary oral motor skills for speech. At three and a half years old, she has the speech of a two year old because she can’t eat enough food to strengthen and coordinate her speech muscles. The result is an inability to communicate clearly with her Mommy and Daddy when her tummy hurts, if her throat and esophagus burn, or if she has headaches or body aches, other symptoms of EoE. We sometimes take our best guess at what might bring her comfort.
The biggest challenge right now is that few people have any understanding of the complexity of this disease and how it impacts small children physically, mentally and emotionally. Kelley and I have grown immune to the comment, “Oh, she just has food allergies. Just have her eat something else.” Sometimes, little ears hear those words and Izzy is too young to understand why she can’t just eat “something else.”
But there is good news, too…and it starts with the incredibly fantastic Starlight Children’s Foundation. Starlight has provided Izzy with her first (of hopefully many) 49ers game, an all-the-frills-included Halloween Pumpkin Patch Great Escape and a chance to see and meet one of her TV favorites in person...the Berenstein Bears!
Izzy is slowly learning that there are other wonderful children out there who have this ruthless disease and those who battle other diseases and illnesses. When we attend a Starlight Great Escape family event, it is no overstatement to say that it is the equivalent to taking a holiday from our daily struggles. Our attention is diverted, if even for a few hours, to doing something fun and outside the box and in a setting that makes Izzy feel about as normal as any three-year-old toddler.
Starlight is as therapeutic for the parents as it is for the children it serves. We are able to vent our challenges and share our success stories in the hopes that something might prove beneficial to another family. Kelley and I have made several friends and we always look forward to the next Great Escape when we can all share our stories of triumph over illness and even the occasional setbacks at hospitals.
When the burdens of daily life seem to sometimes overwhelm us, Starlight provides one thing...an opportunity to allow a child to enjoy being a child, no strings attached. A precious gift indeed.
-A grateful and blessed Barrios family