This week is a roller coaster ride for the Bafus family! Join us as we fight the Exondys Exon Skipping Battle with endless calls, phone tag chaos, and the determination to get Jack the treatment he needs.
Disclaimer: This is not medical advice. These videos simply serve as documentation surrounding this treatment and decisions we've made, as parents, to potentially better the lives of our children.
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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.
Sarepta has also produced Exondys 51, which Jack will begin next week.
HUGE THANK YOU to Sarepta (Elevidys) and the Seattle Children's Hospital!!!
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Hey! If we're meeting for the first time- We are the Bafus family, and we are starting this KZread channel to give hope, document our journey, and to shine light on duchenne muscular dystrophy.
For our first 7 days, we posted one video a day, documenting Mason's $3.2 million, once in a lifetime gene therapy.
You can watch that here ➡: • Mason's Gene Therapy
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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 KZread to help spread the message and raise awareness of this rare disease.
You can follow us here 👇
/ bafusfamily
/ @bafusfamily
#exondys #duchenne #duchennemusculardystrophy #dmd #musculardystrophy #familyvlog