These Braces Will Change Mason's Life (AFO & Night Splints)
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- Опубликовано: 20 авг 2024
- Ever wonder how AFOs and Night Splints help kids with DMD? Today Mason takes a giant leap forward (Thanks to Shriners Children's Hospital)! We are also faced with Jack's Exondys program changes, but we see progress with his treatment!
Mason's AFO/Night Splint Fitting 👉🏻: • Custom Leg Braces (AFO...
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 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
#afo #dmd #familyvlog
My name is Houria from Spain I want to tell you that I have a son the same age as your son and he also suffers from Duchen Peker muscular dystrophy, I have been following for some time
Thank you 😊
your videos and your experience with the disease, and I want to contact you so that you can share your experience and advice with me, because this disease is very rare and I have never heard of it. I hope you read my messages and answer me soon. thank you
How is Mason doing with the night splints?
He’s doing great so far! He really hasn’t complained yet 😊
While suffering from Duchenne, is Mason able to climb up stairs etc.?
He can go up and down stairs pretty well! Especially post gene therapy
@@BafusFamily Is it possible to make a video about this special ability? Can Jack do it too, can't he?
We will make a before and after video of mason! Jack is still just crawling stairs he doesn’t have the strength yet to climb stairs. We are working on that in PT for jack.
@@BafusFamily I hope Jack also will become able to do all the things Mason can do pretty soon...
I hope so too. :)