Hope For Jack! Exon Skipping News
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- Опубликовано: 20 авг 2024
- We have BIG news to share! This week, Jada finally reveals the exciting news - Jack has been approved for Exon Skipping therapy (As the name suggests, the principle of exon skipping is to encourage the cellular machinery to 'skip over' an exon.)! This is a huge step forward in Jack's journey, and we're overwhelmed with joy. But the celebrations don't stop there! Join us as we also share Mason's heartwarming performance at his preschool sing-along, continued decrease in his prednisone steroid and an update on his health including the need for a 24-hour heart monitor test.
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 RUclips 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 RUclips to help spread the message and raise awareness of this rare disease.
You can follow us here 👇
/ bafusfamily
/ @bafusfamily
#duchenne #duchennemusculardystrophy #dmd #musculardystrophy #familyvlog
