Small Steps, BIG Exhales - Day 3
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 YouTube 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 YouTube to help spread the message and raise awareness of this rare disease. You can follow us here on YouTube and on Instagram @BafusFamily #duchenne #duchennemusculardystrophy #dmd

Hospital Halls to Museum Walls: Today we have FUN - Day 4

Custom Leg Braces (AFOs) & Log-Rides!

mri, softball & sleep overs

WORLD EXCLUSIVE: Michael Jackson's "Secret Family" Breaks 25-Year Silence | 60 Minutes Australia

Even Miracles Have Side Effects: Mason's Challenging Day - Day 5

Mornings with 3 kids 4 and under

"Keine Filter!": So sieht Yannis die Welt mit Autismus I stark! bei 37 Grad

When Everything Stopped, She Learned To Start Again | Recovering from Spinal Cord Injury

Life without solid food – Edda's illness is barely researched | SAT.1 Breakfast Television

Einschlafmeditation: Ich bin für dich da | Wenn du nicht alleine einschlafen willst

Inside West Virginia's Most Remote Holler

These Braces Will Change Mason's Life (AFO & Night Splints)

Duchenne Clinical Trial Journey | Muscle Biopsy Day

The Story of Sunny (A Kid with Williams Syndrome)

Klaas schickt 3-Jährigen ALLEINE zum Bäcker | Experte für Alles

FSH Muscular Dystrophy Documentary

Ursula, Marc, and their four children live in an old house spanning 90 square meters | ARD Room Tour

Celebrating Jack’s Birthday in the Hospital | Clinical Trial Update

New Hope for Duchenne Muscular Dystrophy – Deramiocel Could Make a Difference.

