Echo, EKG, & Hope! Mason's Heart Update
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- Опубликовано: 20 авг 2024
- The wait is over! We finally get some answers about Mason's heart health after his Echo, EKG, and a meeting with the cardiologist.
The exon-treatment we're trying to get Jack approved for is called Exondys
👉🏻 www.exondys51.com
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.
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 #dmd #musculardystrophy #familyvlog
Shout out to the 34% gang!!! 💪🏻
I would love some information on the trauma group please!
rebootrecovery.com/trauma/
I hope this helps!