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Jan. 26, 2021

TOPIC: Patient Stories, Rare Disease Day

Bradley’s Story in Honor of Rare Disease Day

Posted by Valaree DonFrancesco

My son Bradley was diagnosed with infantile myofibromatosis when he was four months old. We noticed he had a large mass on his forearm and immediately called the pediatrician. They sent us to radiology to have an ultrasound done and before we knew it, we were headed to the medical center in Houston, Texas to meet an oncologist. After months of MRIs, CTs, ultrasounds and biopsies, they finally diagnosed him with infantile myofibromatosis. 

This disease causes benign tumors to grow randomly throughout his body for unknown reasons onto any muscle or organ. When he was eight months old, one of his tumors that grew on his leg fractured his right femur. He didn’t start crawling until he was twelve months old and finally started walking at eighteen months. Bradley is now two years old and he is thriving! 

In general, being a parent is one of the toughest jobs you will ever endure, but to be a parent to a child with a rare disease is a whole other level of tough. As a first-time mother, I never expected to be a mom to a sick child. I never thought it could happen to me. We went through so much heartache and we felt defeated all the time. It was frustrating to hear doctors tell us they didn’t know what was wrong or what was causing this. To this day, we see doctors from time to time who have no idea what his disease is. 

 So many people tell us, “You’re so lucky it wasn’t cancer,” and yes, that’s absolutely true. I want others to be aware that just because it isn’t cancer or you can’t physically see that something is wrong, be kind. We are going through the unimaginable. My son’s disease is important too, and it is life-changing. Bradley’s disease matters.