Today felt... weird. These steps we're taking are both BIG and small. Today feels like a small step day. Today is the day after Mason's Elevidys Gene Therapy Infusion, and things feel kind of normal? Kind of not? You know?
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!!!
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.
For our first 7 days, we will be posting one video a day, documenting Mason's $3.2 million, once in a lifetime gene therapy.
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