Bryan Boys Story
Sawyer (10) & Wesley (7) Bryan, of Tea, were recently diagnosed with Duchenne Muscular Dystrophy (DMD), a rare progressive muscle loss disease. “Bryan Boys for Hope” is the title created by the Bryan family to raise awareness, education and drive funding in support of a customized therapeutic for both boys. The Bryan’s have aligned themselves with a Boston based non-profit called Cure Rare Disease (CRD).
DMD is the most common fatal genetic disorder diagnosed in childhood affecting 1 in every 3,500 male births. There is currently no cure for Duchenne Muscular Dystrophy. The dystrophin gene is the largest known human gene and it provides instructions for making the protein dystrophin, which holds muscles together and helps maintain function. This gene fits together like a long string of 79 puzzle pieces. Any one duplication, deletion or error in the sequence can stop the protein from being produced. Boys with Duchenne lose muscle throughout their life and typically lose the ability to walk between ages 10-12 and normally do not survive their mid-twenties. The diagnosis of DMD runs on a spectrum with some seeing symptoms and hardships very early on and others showing struggles later in time.
The Bryan’s current routine involves daily steroids, supplements, muscles stretches, strict diets, leg splints, bi-weekly physical therapy and a whole lot of Love and Prayer. A muscle biopsy was recently completed for Sawyer at the University of Massachusetts and a prototype capable or repairing the gene discrepancy is underway at SickKids Hospital in Toronto.
You can follow the Bryan family by searching ”Bryan Boys for Hope” on Facebook and Instagram and more can be learned about CRD by visiting cureraredisease.org.
