Feb. 9, 2022
Posted by Maia Craig
Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Bradley’s journey with Infantile Myofibromatosis. If you want to share your rare story in honor of Rare Disease Day, visit NORD’s website.
My son Bradley was diagnosed with Infantile Myofibromatosis when he was four months old. When he was one and a half months old, we found his first tumor on his right arm. We called his pediatrician and immediately we were sent to radiology and before we knew it, our oncology journey had begun. We started with MRIs, CTs, biopsies, and ultrasounds. While waiting for the results, we found our second tumor on the right side of his spine and after months of testing, he was finally diagnosed 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 three years old, and he is THRIVING! This disease took over our family’s life for two years. For those years we were living with what felt like the unknown. With each MRI and CT scan, we held our breath and awaited the news of new fibromas. We were constantly worried that something was going to show up that would alter our lives further. Being a parent is hard but being a parent to a child with a rare disease is something that no book, blog, or training can prepare you for.
Rare Disease Day is important to our family because it helps us know that we were not alone in our trials and tribulations. It shows just how many people are affected by rare diseases that you wouldn’t even know about. 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.
I work at a small private school in Houston, Texas and we will be celebrating Rare Disease Day on the 28th by wearing stripes to school!
To learn more or get involved with Rare Disease Day, please visit NORD’s Rare Disease Day website.