Brady was four days old when he was hospitalized for the first time. He continued to be sick. He remained classified as failure to thrive. Day after day if felt like all we did was fight to keep him alive. The days turned into months and then into years. We were in and out of the hospital, tossed around from specialist to specialist. It’s a helpless feeling to watch your baby boy hurt and have no conclusive answers, no real way to help him.
For the first couple of years, we were at doctor’s offices more days than we were not. It was consuming. But during all of it, we were still parents to three other children who needed us, our love, our attention, our time. Trying to maintain some normalcy as a family seemed impossible.
Finally, just before he turned two, Brady got a diagnosis: Food Protein Induced Enterocolitis Syndrome (or FPIES). To explain it simply, it basically means that Brady is allergic to food. Almost all of it.
Food, the very thing that is supposed to nourish his body, is Brady’s enemy. It is his poison. Just like many families keep their cleaning solutions under lock and key to prevent accidental ingestion—our pantry and refrigerator are locked down to protect our preschooler from what is toxic to his body…the food the rest of us eat every day.
Since his diagnosis three years ago, Brady’s weeks and years have been spent trialing new foods and failing. And each new failed food trial would send him spiraling into a variety of harsh symptoms. Symptoms that would sometimes take weeks to reverse. And it wore on his whole system. He became susceptible to infection and battled pneumonia, strep and influenza. Treating him for those illnesses was complicated. His body can’t even handle oral antibiotics. So when Brady gets an infection, it usually means hospitalization and IV meds.
He is almost five now. And Brady has been kept alive by one specialized infant formula. It is the one and only elemental formula that his body can tolerate. In the last three years, his food trials helped us identify three safe foods: carrots, apples and kamut (an ancient wheat grain). I can’t tell you how excited all of us were to find something he could eat that didn’t make him terribly sick!
But the truth is, he can’t live on those three foods. They alone are not enough to sustain him. So he continues to rely on a specialized formula, with a price tag of $1,500 per month—an expense that is NOT covered by any insurance. He currently requires two medications on a regular basis, plus he has his inhaler and epi pen for emergencies. Our copay for those meds is $200 out of our pockets every month. The deductibles and copays for almost five-years-worth of surgeries, broken bones, scopes, medications, emergency room visits, hospital stays…the list goes on…they have overwhelmed our family of six.
The Do More Foundation was able to help Brady’s family with some of their medical expenses that the insurance does not cover.