Brady: Dystrophic
|
Brady was born in July 2016 in Houston, Texas. After a healthy pregnancy and uncomplicated birth, my husband and I noticed something was terribly wrong. Upon first glance at our new baby boy, we noticed his tiny feet were raw and missing skin. After two weeks in the NICU and a heartbreaking diagnosis of RDEB, we brought Brady home.
We were overwhelmed. Not only by the daily tasks required to keep him safe and healthy, but by the effort it took to get the resources we needed to keep him alive. Home health agencies in our area were hesitant to take on a patient (especially an infant) with a diagnosis of EB. Our private insurance company would not cover wound care supplies that cost upwards of $8,000 a month. Although this was a choice for them, it was not a choice for us. These bandages would be Brady’s only form of “treatment” and without them, he would not survive. We realized quickly that the rarity of this disease meant that our path forward would be challenging every single day in more ways than we ever imagined. Living in Houston’s heat and humidity added to the complexities of Brady’s daily life, and on Brady’s second birthday, we moved our family to Denver. Over the past year as a Coloradoan, Brady has marveled at the beauty that surrounds him. Views of mountains and lakes from the hiking backpack he perches on during family explorations to breezy days and evenings at the park. He giggles with his brother and neighbors on cool evenings outside, an occasion we delight in more evenings than not. We are also just a few short miles away from our absolutely fantastic team of care providers at Children’s Hospital of Colorado. Perhaps our biggest source of inspiration in this new chapter of life, is the brilliant minds and careful hands of the scientists at The Gates Center for Regenerative Medicine. We are eternally indebted to EBRP and their foresight to create a team that will find a cure for EB sooner than ever imaginable. Because of EBRP, we believe that one day, Brady will be able to run on soft grass and play with his brother without the pain of another wound. -Eileen and Chris, Brady's Mom and Dad |
|
