This week with the Bafus family is a whirlwind of medical appointments and unexpected challenges! Mom/Jada kicks things off feeling under the weather, but pushes through to get Jack to his big MRI for his Chiari malformation check-up. Jack bravely faces sedation. Jada tackles her own appointment. Meanwhile, Mason endures another blood draw, and to top it all off, Bryan takes a trip to the emergency room! PHEW!
Thank you for all the views, likes, subs, and support- seeing this story spread has been humbling. We're building a community here with you. Thank you all.
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Hey! If we're meeting for the first time- We are the Bafus family, and we are starting this KZfaq channel to give hope, document our journey, and to shine light on duchenne muscular dystrophy. Mason was recently infused with Elevidys.
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!!!
For the first 7 days, we posted 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 KZfaq to help spread the message and raise awareness of this rare disease.
You can follow us here:
/ @bafusfamily
/ bafusfamily@uckfjqkbr3...
#duchenne #duchennemusculardystrophy #dmd #chiari #chiarimalformation #family #familyvlog #vlog