GREAT NEWS! Mason is finally able to decrease his dosage of Prednisone! Join us as we delve deeper into this positive development and other updates for the Bafus family. Jada, as a carrier of Duchenne muscular dystrophy, gets an Echogram on her heart, and we also learn that Mason will need to continue labs for a few more months. Also Happy Mother's Day to all the Moms out there!
Disclaimer: This video is for informational purposes only and should not be a substitute for professional medical advice. Always consult with a doctor about your specific health concerns. 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 infusion 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 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 RU-vid 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 RU-vid to help spread the message and raise awareness of this rare disease.
You can follow us here 👇
/ bafusfamily
/ @bafusfamily
#duchenne #duchennemusculardystrophy #dmd #musculardystrophy #familyvlog
30 сен 2024