Six months after our second child, A.J., was born, our lives suddenly changed drastically. A.J. was placed on a feeding tube, following an epileptic seizure and a diagnosis of malformation of cortical development, which means the cortex of his brain didn’t form properly. My husband, Tony, and I followed our doctors’ and nutritionists’ advice, and gave A.J. commercial formula through his feeding tube. When I discovered that corn syrup was the main ingredient in that formula, I realized A.J. was getting an affordable, easy source of calories but no variety, and no substantial food. I decided to start experimenting with pureeing and blending whole foods to feed A.J. through his feeding tube.
It took a long time to blend, prepare, and cook his food, but I watched A.J.’s health improve dramatically after he began eating the new pureed foods through his feeding tube instead of the packaged formula we had been using up until then.
Tony and I knew we were onto something: a line of formula created from whole foods for people who require a feeding tube.
A.J. is now 7, and our daughter, Luca, is 9, and since the moment we started thinking about our company, Real Food Blends, our whole world looked different. It’s incredible to think of those early days, when we didn’t even know what a feeding tube was. Early on, we were shell-shocked, as every parent of a child with a special need is.
We discovered that A.J.’s digestive system works just fine. His issue was difficulty getting food into his stomach safely. We learned that the act of swallowing is a complex neurological function. There have been quite a few labels thrown at our little man that make this situation challenging, including incorrect diagnoses of epilepsy, cerebral palsy, autism, and global developmental delay.
Still, we were determined to create something better for him and for the hundreds of thousands of people — we’ve read that there could be up to a million — at home using feeding tubes. These individuals may have oral or esophageal cancer, ALS, cystic fibrosis, cerebral palsy, or may have had a stroke. We raised some money from angel investors, and spent the better part of two years doing research and development, before starting a crowd-funding site in 2013. We sold out in 20 days.
We definitely felt like we were in a David and Goliath situation when we started: There are large formula companies like Nestle and Abbott, but there’s no one out there making meals for people using feeding tubes. This mealtime concept — the idea that you shouldn’t have to be fed the same thing every day, that you should feel as special and as normal as possible, and not like eating is a medicinal process — was really important to us. We worked nonstop with nutritionists and food scientists to perfect the process, creating a product that’s nutritious, shelf-stable, and free of preservatives and corn syrup.
Along the way, we’ve learned that it takes a village when you have a special-needs child. Thanks to this company, we have flexibility that we wouldn’t have with a 9-to-5 job. A.J. goes to a full-day special-needs school, and they feed him his blends for lunch, he gets to swim once a week, he receives his therapies there, and he gets to be around other kids.
A New Perspective
In some ways, we’re a typical working family, but there are a lot of doctors’ appointments and a lot of time spent calling insurance companies. Our family certainly looks different than a lot of others, as A.J. is still in a wheelchair — he’s not walking or talking — but he’s personable; he’s not in a corner or sitting in bed all day. He’s active, he scoots around the house, and he looks for me in the kitchen when he has a dirty diaper.
Because of our company, we’ve gotten a great perspective on our situation. For example, we get calls, emails, and Facebook posts from our 90,000 followers, and from customers who tell us they won’t need meals this month, as their kids are in the hospital or have passed away. And adults as well as kids face this nutritional need. We’re reminded of this when we get requests to donate unused meals after a husband passes away. So we keep it all in perspective. As much as people see us and think, “‘That poor family — their son is in a wheelchair,” we think, We’re lucky A.J. is healthy and happy, and at home with us.
I always want people to know that you could be sitting next to someone using a feeding tube and never know it. I also believe that just because you need a feeding tube doesn’t mean you can’t benefit from nutrition and real food like anyone else. You should have access to a wide variety of whole grains, fruits and veggies, and lean proteins.
I can’t believe Tony and I have created something that has helped so many people, including patients at the Mayo and Cleveland Clinics. I know we’ve made A.J. proud.
By Julie Bombacino, as told to Lambeth Hochwald