A Note From Maddox’s Mom!

Maddox was born on Sept 3, 2010. He was perfect. We took him home from the hospital the day after he was born, only to bring him back the next day due to jaundice. He stayed in the hospital for a week.

When he was 3 weeks old, I had to rush him to the ER due to severe bleeding from his GI tract. His father was at military training and not able to get phone calls. Maddox spent 14 days in the PICU until we found out he had severe food allergies. We had no idea that when we were feeding him, we were causing severe bleeding to occur in his colon. He has always cried since birth. We were told it was colic or reflux. We had no idea that we were slowly killing our child while only trying to feed him. As he got older, we found more allergies. By the time he was a toddler, he could only eat special foods. I had to make everything from scratch. He is now 8 years old and diagnosed with Eosinophilic Esophagitis (EoE). He’s also diagnosed with Ehlers-Danlos Syndrome, a connective tissue disease that causes him to dislocate his joints frequently and has had 11 broken bones due to this issue. Due to all his medical issues, he now has severe anxiety. He is slowly working through all his medical issues and has 2 mini potbelly pigs as pets, which comfort him during his difficult times.

He is currently seen at Cincinnati Children's Hospital, which has one of the largest research facilities for eosinophilic diseases in children. He goes every three months to have surgery and see how his GI tract is responding to the current medication. We know in the future he will need to go back on a special diet of only elemental formula and then introduce one food at a time. In most children/adults with EoE, they must take this formula in a feeding tube. Doing this type of diet will allow us to find out exactly what he is reacting too. Traditional allergy testing does not cover EoE allergies. It is a guessing game as to what will or will not work for him. He is often in lots of pain due to flares. He has severe chronic abdominal pain, nausea and vomiting. We never know when it will hit him.

He goes to a co-op school that allows him to work from home if needed. He does not let his illness hold him back. Maddox loves to play soccer and is a green belt in Taekwondo. He has an older and younger brother that he enjoys spending time with. Maddox wants to be a pediatrician when he grows up. He says that he wants to help children and ensure that they don't have the same pain he has to deal with.