16 сағат бұрын
14 күн бұрын
21 күн бұрын
28 күн бұрын
Ай бұрын
2 ай бұрын
2 ай бұрын
2 ай бұрын
3 ай бұрын
5 ай бұрын
5 ай бұрын
Пікірлер
@janeb.4693 21 сағат бұрын
I liked when he sweetly added "I guess" trying not to hurt mom😊
@bolyardhomephone7167 Күн бұрын
SLIKNNNYY DOGGGGG!!!
@Draylob 6 күн бұрын
😂
@quiltychick 6 күн бұрын
My fear of heights kicked in just watching Mason! 😧
@BafusFamily Күн бұрын
😂
@quiltychick 6 күн бұрын
I hope you guys are having a blast! ❤
@dalarice67 6 күн бұрын
That for real?? Omg
@janeb.4693 7 күн бұрын
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?
@BafusFamily Күн бұрын
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?
@njcoastie95 7 күн бұрын
This is awesome!! So glad for y'all. Hope this helps Mason out and your other son when he gets it. We're on the list waiting for our Neurologist to get word from our insurance to go ahead with it for our son who is 14.
@BafusFamily Күн бұрын
That’s awesome! I hope it all goes smoothly:) and thank you so much!
@jamesbitto2521 9 күн бұрын
Great, because Disney says only autism
@BafusFamily 6 күн бұрын
So great!
@cocorunny6597 13 күн бұрын
there are no longer preselects, they did away with that with the changes
@BafusFamily 13 күн бұрын
That is great to know thank you for that information! Makes sense 🥰
@khuddle731 13 күн бұрын
🤣🤣 sweet boy!
@Draylob 13 күн бұрын
😂
@Anarchy7774 14 күн бұрын
Proud of u mason feel better soon little man
@BafusFamily 14 күн бұрын
He’s doing so well thank you so much! 🥰
@candicenicole7669 20 күн бұрын
Did you get Jack on steroids before starting the Exon skipping?
@BafusFamily 20 күн бұрын
We did not. We haven’t put Jack on steroids yet 🥰
@meskeremkidanemariam88 21 күн бұрын
God Always With You!!
@BafusFamily 21 күн бұрын
🙌🏻🙏
@meganthomas9949 Ай бұрын
I have a three drawer system to keep all supplies organized. ❤
@BafusFamily 28 күн бұрын
That's a great idea!
@jaysimoes3705 Ай бұрын
Good. The less prednisone the better (to some extend). Have you alreayd considered Vamorolone? I am unsure if it is available alreay in the USA? How about Givinostat? I think it is not available yet, but Vamorolone has less side effects (better for bones I think and much better for his growth, become normal again!) and givinostat is I think an HDAC inhibitor, which means it treats Duchenne very differently than Elevidys and in all likelihood should be able to combine with it without side-effects (but that is my guess). Good to see the other boy can get some relief with exonskipping! All the best and keep up the good work. And indeed: eat healthy, it is so so so important also for the parents. At least that is what I think.
@BafusFamily Ай бұрын
We have looked into these options briefly! Our neurologist and medical team doesn’t want to change up the steroids quite yet this soon post the gene therapy. We plan to have our other little guy on one of these when the time comes! But our goal is definitely to not have them on the steroids! Also we plan to try weekend dosing as well. We are excited for the Econ skipping to start! Thank you for the advice! 😊
@jaysimoes3705 Ай бұрын
@@BafusFamily I can understand that. There is one example of two kids getting Galgt2 therapy (briefly a therapy that has nothing to do with dystrophin, but it changes a thing elsewhere and this thing uses utrophin to stabilse the muscle membrane). One kept on using steroids and did pretty well, just not as good as kids on elevidys. The other kids parents stopped steroids and he became non-ambulant soon after. I think this boy was already not doing too well and it is just one boy, so we can't connect it to taking away the steroids. But it does go against the advice of doctors. Good luck with the skipping! I hope it all works out fine. I do wonder with the older one who has had Elevidys: do you see clear improvement? A changed course of the disease? Take care!
@angelikascholten9983 Ай бұрын
Dann wären mir meine Haare egal gewesen
@ShahNawaz-kp3jn Ай бұрын
Hi Madam My three disabled brothers suffering from Disease Muscular Dystrophy I'm from Pakistan
@JadaBafus Ай бұрын
I hope my fellow DMD moms had a wonderful Mother’s Day! ❤
@sarabnagra3456 Ай бұрын
India Me jldi ave DMD ki medicine
@BafusFamily Ай бұрын
We do not know information on that, apologies
@rameshkannarameshkanna7522 Ай бұрын
Tell me short what is the result of DMD mam
@BafusFamily Ай бұрын
We will be making a video to compare Mason's progress in the coming weeks. We are giving all of the updates we can with each week's video. Thank you for watching
@bolyardhomephone7167 2 ай бұрын
The scream at the end is HILARIOUS 😂
@lee-annegrandsire165 2 ай бұрын
I would love some information on the trauma group please!
@BafusFamily 2 ай бұрын
rebootrecovery.com/trauma/ I hope this helps!
@ianbolyard 2 ай бұрын
Shout out to the 34% gang!!! 💪🏻
@rameshkannarameshkanna7522 2 ай бұрын
Any treatment to cure DMD mam
@BafusFamily 2 ай бұрын
Currently there is no known cure. We post updates each week documenting progress and our results with therapy.
@ren_ww 2 ай бұрын
why does he look like hes 34?
@BafusFamily 2 ай бұрын
🤣🤣
@Juliet-bd2zw 2 ай бұрын
He is WAY to cute ✋😩
@BafusFamily 2 ай бұрын
Thank you 🥰
@Juliet-bd2zw Ай бұрын
🩵🩵🩵
@user-bn6lf7bn2p 2 ай бұрын
😅😂
@BafusFamily 2 ай бұрын
🤣
@beeeeounka 2 ай бұрын
14 to 1000 real quick, you better watch him mama! 😂😂😂
@BafusFamily 2 ай бұрын
Agreed! 🤣
@heathergomez4893 2 ай бұрын
His iyebroses
@Serenoj69 2 ай бұрын
Things that come to mind as a Northern European (Dutch and we are known to be very direct, AKA blunt): get rid of the fastfood. Get a healthy lifestyle: Take a brisk walk for 30-45 minutes every day. Eat veggies, loads of them. Get rid of cookies, potato chips, candybars, candies in general etcetc. You will feel much better, refreshed. It is also a lot better for your kids btw. Keep pizza etc for once per 2 weeks or per month. After 6 months to a year, if you keep it up, you won't miss them at all anymore. You will like your much better health in all likelihood. The American thing with unsurrance companies and how THEY, rather then your doctor, control what is needed for a (seriously) ill kid is mindboggling to a European. They can't do this over here. It is simple. You pay around 40-50 dollar per person per month and there are never any extra costs at all. If a medication costs 3 million and a kid needs it, than the kid gets it. Period. But of course not helpful for you....Just a notion. Many things in the USA are simply beyond most of us over here (less than 20% of Dutch are religious, that includes Muslims, Christians etc). Not better or worse, just different. So when you said:...go to Church...I honestly am amazed. Again: not because it is good or bad, but it is different and of course I know that is the case when I think of it a bit more. I wonder how it can be so different from here. I love how your kids are enjoying life, you push them to seek where their limits are (JUMP!) and it is great. But if you want to feel better, body and mind you need to push yourself too may be to try and get rid of unhealthy lifestyles (and I know it is hard!)? You share your experience on line. I think it is helpful for loads of people. Remain strong and keep up the good work!
@BafusFamily 2 ай бұрын
Hello! Thank you so much for these tips! And I completely agree about the insurance being the ones to "decide" and "dictate" what's medically necessary for your child, which is so unfortunate here. It is mind boggling. It definitely sounds way more simple over there 🥰. And I appreciate the compliments about encouraging others to trust in God in these situations! And they really do enjoy life ♥️ 🤗 Thank you so much for watching.
@khuddle731 2 ай бұрын
My heart goes out to your family. Such an inspiration to find joy in everything.
@BafusFamily 2 ай бұрын
Thank you so much 😊
@rameshkannarameshkanna7522 2 ай бұрын
What is the results
@BafusFamily 2 ай бұрын
We give the updates in the video, thank you for watching.
@laurabarrientos9846 2 ай бұрын
Question, did you quarantine after infusion or before? I did see you had an outing. Or did you just see how your son felt that day?
@BafusFamily 2 ай бұрын
We did take him out of school and quarantined for a week before the infusion to avoid getting sick. Post treatment we took it day by day based on how he was feeling making sure to sanitize so that he stayed healthy.
@jessicachacon 2 ай бұрын
Oh my goodness your kiddos are too cute!! You mention that Jack is a little behind in his motor development. I wanted to recommend looking into a PX Doc Chiropractor. I think it could be super beneficial for even both kiddos. You guys are amazing parents!!!!
@BafusFamily 2 ай бұрын
Thank you so much for the suggestion. We will look into this!
@candicenicole7669 2 ай бұрын
Was your son doing exon skipping before getting Elevidys?
@BafusFamily 2 ай бұрын
He did not do exon skipping first. Luckily we were diagnosed the same month Elevidys was approved so we immediately pursued that. We are in the process of trying to get Jack approved for exon skipping!
@lexward1834 3 ай бұрын
LexSo when you go get the green patches and good one take care of his online banking pay off the truck and then he went back to him and then he can pull back in here at the Black Bear and then either day let’s get the kids ready Jackie know what
@BafusFamily 2 ай бұрын
Looks like autcorrect got the best of your comment 🤣
@jaysimoes3705 3 ай бұрын
I saw elevidys is working well for the older son. That is good to see! I hope you will follow up regularly so others can see what Elevidys can do for a kid. How old is the older child? It is btw not dystorphin but dystrophin, but that is a minor point. Good information!
@BafusFamily 3 ай бұрын
Thank you so much! He is 5 years old and we will definitely continue to update his progress.
@vijayalakshmisaravanan7816 3 ай бұрын
Hi sister how is your Mason health
@BafusFamily 3 ай бұрын
Thanks for asking- all of our latest updates are mentioned in the video.
@rameshkannarameshkanna7522 3 ай бұрын
Any improvement mam DMD
@BafusFamily 3 ай бұрын
@@rameshkannarameshkanna7522 We just posted an update yesterday in the latest video
@rameshkannarameshkanna7522 3 ай бұрын
@@BafusFamily mam my son is affected by DMD exons deleted 3-30 and he is 10 years old please help me mam I am from India
@idahatoum3453 3 ай бұрын
We’ve been loving watching your journey as a family thank you for sharing! My son Owen (age 6) has a joke he wants to tell mason that he thinks mason will like… what is a pirate’s favorite instrument? A guitarrrrrrrrrrrr! 😊
@BafusFamily 3 ай бұрын
Thank you for watching our journey! He will love this joke and I will have his reaction on the video so stay tuned 😜 Tell Owen thank you for sharing!
@ebrubakir2412 3 ай бұрын
Thank you for the valuable information. Could you provide further details on the alterations in CK levels and other biomarkers, as well as any changes in physical activities following the administration of Elevidys?
@BafusFamily 3 ай бұрын
The biggest changes we're seeing so far is Mason's ability to run a little faster with better balance. He's walking up stairs a little better, but walking downstairs is still a struggle. He is able to get off the ground faster. He should progress more, about 3-6 months post infusion!
@dalarice67 3 ай бұрын
What a nice and clear description. Thank you for sharing. I hope this reaches families just like yours. We're all in this together!!! LET'S FIGHT DMD TOGETHER!!
@BafusFamily 3 ай бұрын
Thank you
@vijayalakshmisaravanan7816 3 ай бұрын
How is Mason mam
@BafusFamily 3 ай бұрын
Mason is still doing well, thank you!
@StephanieHarding-ip3wv 3 ай бұрын
Thank you for sharing ❤
@BafusFamily 3 ай бұрын
You are welcome! Thank you for watching 😊
@davidgriffiths481 3 ай бұрын
Hope mason feeling better
@BafusFamily 3 ай бұрын
He's feeling great now, thank you!
@virginiagill5902 3 ай бұрын
Oh ouch! I’ve had kidney stones myself, it’s never easy. Hopefully your doctor will get your stone tested to see what it’s made of so you can’t make adjustments to prevent more. I will be keeping you in my prayers.
@BafusFamily 3 ай бұрын
Yes hopefully they can test it, thank you!
@rameshkannarameshkanna7522 3 ай бұрын
DMD feedback therapy
@debvoltolina6143 3 ай бұрын
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 .
@BafusFamily 3 ай бұрын
Welcome and Thank you for the prayers and watching our journey!
@debvoltolina6143 3 ай бұрын
You did a great job big guy !