Travel plans disrupted! Just as we were about to leave Seattle after a whirlwind 2 weeks, we encounter a frustrating setback - our rental car gets broken into! But we don't let this dampen our spirits. We say goodbye to the Emerald City, before coming back for another set of labs, and embark on a journey to a calmer environment for a much-needed family reunion.
Hey! If we're meeting for the first time- We are the Bafus family, and we are starting this KZfaq channel to give hope, document our journey, and to shine light on duchenne muscular dystrophy. Our oldest son, Mason (5), was recently treated with a gene therapy called Elevidys.
What's Elevidys? Elevidys is a gene therapy from Sarepta. It's the first gene therapy FDA approved for pediatric patients (4-5 years old) with Duchenne muscular dystrophy.
HUGE THANK YOU to Sarepta (Elevidys) and Seattle Children's Hospital!!!
We are typically private people, just like you, but this disease has forced us more into the public, and that's ok. We've learned that this is not a disease that anyone can fight alone. So we decided to take to KZfaq to help spread the message and raise awareness of this rare disease.
You can follow us here on KZfaq and on Instagram ‪@BafusFamily‬
#duchenne #duchennemusculardystrophy #dmd