Planning a Disney trip with Duchenne Muscular Dystrophy (DMD) can be tough, especially navigating the Disability Access Service (DAS) Pass process. In this video we share our experience advocating for Mason and Jack to get their DAS Pass and unlock some core memories at Disney World before we go to the PPMD Conference!
👉🏻 Disney DAS Pass Portal : disneyworld.disney.go.com/gue...
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.
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
#disney #dmd #familyvlog
17 июн 2024
