Hope & Hurdles: Jack's Exondys 51 Journey Begins
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- Опубликовано: 4 окт 2024
- This week is a whirlwind of emotions for the Bafus family! We celebrate the exciting start of Jack's Exondys 51 therapy (exon skipping), followed by a fun-filled family trip to Silverwood. But amidst the joy, an unexpected hurdle arises with Mason's health. Join us as we navigate the highs and lows of this journey, and learn more about Exondys 51 from Sarepta's website.
👉🏻Exondys Website: 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. Please do your own research.
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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
#exondys #dmd #fam
Did you get Jack on steroids before starting the Exon skipping?
We did not. We haven’t put Jack on steroids yet 🥰
Hi! Why does Jack take exondis and Maison took elevidis? And does Maison take steroids after Elevidis?) My son is going to take Elevidis in about 2 days. We are so nervous but excited 🙏 do you see good changes after elevidis?
Jack is only two and the age minimum for Elevidys is four so we are doing the Econ skipping until he is of age for gene therapy:) and yes we have seen great results so far with it and he had very min side effects. I hope your guy did well with his infusion! How is he doing?
@@BafusFamily thanks for your reply!) This experience exchange is so precious 🩵 My son took Elevidis on the 28th of June. On the third night he had high temperature and vomited twice, he was feeling weak. On the 4th day he had no temperature but still feeling weak and didn't eat anything, just water. The 5th day - he felt better, thanks God he is doing good day after day. So excited about seeing his strength improving but we must be patient 😊 We are in Russia and my son became the first boy here who took the infusion! So your videos with amazing Maison was like guiding star for our family))) Thanks a lot for sharing! 🙏 also here the kids who take another exon skipping therapy are not allowed yet to get Elevidis... That's why I was asking about Jack..
That’s amazing to hear! Congratulations! I hope he’s doing well still. Mason is still doing great himself 😍