5 Syringes, Infinite HOPE: Gene Therapy Day - Day 2
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- čas přidán 24. 01. 2024
- Today is the day! We head up to Seattle Children's Hospital for Mason's HIGHLY anticipated Elevidys Gene Therapy Infusion!
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 Seattle Children's Hospital!!!
Hey! If we're meeting for the first time- We are the Bafus family, and we are starting this CZcams channel to give hope, document our journey, and to shine light on duchenne muscular dystrophy.
For our first 7 days, we will be posting one video a day, documenting Mason's $3.2 million, once in a lifetime gene therapy.
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 CZcams to help spread the message and raise awareness of this rare disease.
You can follow us here on CZcams and on Instagram @BafusFamily
#duchenne #duchennemusculardystrophy #dmd
Wonderful. The prayer over him was powerful to watch. Prayers for you all. ❤️
Thank you 🙏🏻
Thanks so much for sharing this journey. Watching the infusion was a very powerful moment to see. Best wishes
Thank you so much! We were nervous to document at first but felt it was important to share. We appreciate you tuning in!
God bless🙏🙏🙏
Thank you 🙏🏻
God bless 🙏
Congratulations ❤❤❤❤❤
You are so brave mason i love you❤
What a brave boy and brave parents! So sweet that he misses his brother! My son was diagnosed right before school started and turned 8 a couple months ago. I’m praying for your family and the rest of us in the muscular dystrophy community. God bless you guys!
Thank you for sharing! He has been so brave. And I'm so sorry to hear that but it's been an amazing community. We will be praying for your family 🙏
THAT WAS AWESOME!
Congratulations! I wish for excellent advancements in your son's progress and a healthy life ahead. Thank you for sharing these informative videos. What is your son's exons?
Thank you so much! And we are happy to share our experiences with DMD! Both of our boys have a deletion of Exon 50.
Wow how exciting. You guys are pioneers in this treatment. Mason is such a cute little guy. Good luck and heart felt wishes.
Thank you so much! 😊
I have no idea why your family popped up in my feed. Wow amazing stuff here , praise God for giving people this chance ! Beautiful family your in my thoughts in prayers .
Welcome and Thank you for the prayers and watching our journey!
For future if you do this again and live in hotel bring ur mattress topper from home u can just ship it back home and going compress it in those bags that you can vacuum seal it to get it there and back
What a great idea, thank you!
@@BafusFamily also you can use it at hosptial if he need to stay so maybe two cause u don’t want to leave husband or you at home or hotel with out in
Hello, can you tell me how it feels now? How much did you spend? And is it made for all types of dystrophy or not?
He's feeling great now! Our insurance approved this treatment but we do not know yet what we will pay out of pocket. This particular treatment is specific to Duchenne. Thanks!