Пікірлер

• 
  @smylex9915 күн бұрын

  While I’m glad you were able to receive accommodations, technically your boys don’t qualify per Disney Parks’ new policy regarding the DAS.

• 
  @BafusFamily12 күн бұрын

  We were pleased that they did actually qualify for the pass as they were approved for it.

• 
  @smylex9912 күн бұрын

  ⁠@@BafusFamilyI’m genuinely happy for you. I hope you can get as much help as you need for your children. The problem with Disney Parks is there’s a complete lack of consistency in their decision making with how the new requirements have been advertised. I meet the newly implemented requirements exactly as stated (as one of the “Guests who, due to a developmental disability like autism or similar disorder, are unable to wait in a conventional queue for an extended period of time”), yet was denied accommodation, and I’m finding out from other autistics, as well as the parents of autistic children that they’re also being denied.

• 
  @BafusFamily8 күн бұрын

  Oh wow…I’m sorry to hear that. And I agree it’s very frustrating with programs like this have so many inconsistencies like this one when the qualifications are stated clearly. I really had to push for it and didn’t take no for an answer so it definitely was not easy. I agree it can get extremely frustrating and this is just one out of many!

• 
  @jimeagle115515 күн бұрын

  I just wanted to tell our experience. We have an 8 year old daughter with high functioning autism. Applying for DAS for 1st time. We got on @ 6:58 did the terms of service agreement and entered chat at 7 AM exactly. Answered the questions from cast member. She asked name of person for which requesting das and names of all others in the party, arrival and departure date of upcoming visit, if the person in need of das was present and if we were on a device with video and audio capabilities as we would have to move conversation into a video chat. Then the video chat stated and she first explained the recent changes to the DAS system and that past eligiblity does not guarantee current eligibility. Then she asked out concerns. We told her of our daughters diagnosis and offered to show or email documentation, to which she said was not necessary. Then she asked what issues would extended waiting in line cause..to which we explained our concerns. She then asked if she could speak to our daughter and asked her a how she felt about waiting in a lines (which she was unable to answer as she does not do well understanding hypothetical questions). After which she said that she was approved and took her picture then took about 5-10 minutes explaining how the DAS system works and. How to use it on the app. We were completely done by 7:20 am and so relieved as I spent weeks worrying about this. Overall it was painless and seems as though they are trained to look for inconsistency and people trying to get das who don't really need it.

• 
  @BafusFamily12 күн бұрын

  I agree 😁 I’m glad you were approved!

• 
  @XinaGri10 күн бұрын

  Did you get to choose the pre selection for rides?

• 
  @XinaGri10 күн бұрын

  Did you get the ride pre selection eventually?

• 
  @BafusFamily6 күн бұрын

  No actually! Apparently they got rid of that feature to pre select.

• 
  @jimeagle11556 күн бұрын

  @@XinaGri they don't do that anymore

• 
  @jaycc..16 күн бұрын

  My son got approved as well god bless you guys hope everything is well 🙏🏽 from Denver co

• 
  @BafusFamily12 күн бұрын

  Congratulations and good luck!

• 
  @HouriaBenallal-o8e18 күн бұрын

  your videos and your experience with the disease, and I want to contact you so that you can share your experience and advice with me, because this disease is very rare and I have never heard of it. I hope you read my messages and answer me soon. thank you

• 
  @HouriaBenallal-o8e18 күн бұрын

  My name is Houria from Spain I want to tell you that I have a son the same age as your son and he also suffers from Duchen Peker muscular dystrophy, I have been following for some time

• 
  @BafusFamily12 күн бұрын

  Thank you 😊

• 
  @quiltychick18 күн бұрын

  How is Mason doing with the night splints?

• 
  @BafusFamily12 күн бұрын

  He’s doing great so far! He really hasn’t complained yet 😊

• 
  @arndhellinger827618 күн бұрын

  While suffering from Duchenne, is Mason able to climb up stairs etc.?

• 
  @BafusFamily12 күн бұрын

  He can go up and down stairs pretty well! Especially post gene therapy

• 
  @arndhellinger827612 күн бұрын

  @@BafusFamily Is it possible to make a video about this special ability? Can Jack do it too, can't he?

• 
  @BafusFamily6 күн бұрын

  We will make a before and after video of mason! Jack is still just crawling stairs he doesn’t have the strength yet to climb stairs. We are working on that in PT for jack.

• 
  @arndhellinger82766 күн бұрын

  @@BafusFamily I hope Jack also will become able to do all the things Mason can do pretty soon...

• 
  @jenniferagee245026 күн бұрын

  Beautiful Family, I’m Glad You All had a Great time, my 23 year old son (High Functioning ASD) and I was there for 8 days this past November/December. We Love Disney too we also stayed at All Star Movies. ❤🏰

• 
  @BafusFamily19 күн бұрын

  We were so impressed with that hotel! It was perfect for how affordable it was 😁 my next hope is to go during Christmas 🎄

• 
  @jenniferagee245026 күн бұрын

  I’m Happy you were able to get the DAS. I’ve gotten the DAS in the past for my son he’s 23 and is High Functioning Autistic. He might be denied when we go back in a few years, from what I’ve heard they seem pretty strict about giving the DAS. We just went to WDW this past November/December and my son was approved, as well as when we went in 2017 and 2010. If my son is denied we’ll purchase lightening lane single pass and the new lightening lane multi pass. You All Have Fun ❤😊

• 
  @BafusFamily19 күн бұрын

  They do tend to be pretty strict so I was happy to be approved. I agree the new multi pass would be a great second option 🥰 I bet Christmas time was a wonder time to go! I would love to see it all decorated!

• 
  @smylex9912 күн бұрын

  @@jenniferagee2450 Hopefully, they’ll have the problems since the revamp sorted out. Still apply, but don’t be surprised if you get denied. I don’t recommend the purchase of the Multipass, though, especially if you decide to come to Disneyland. The times are artificially inflated by about 20-25 minutes depending on the ride.

• 
  @janeb.4693Ай бұрын

  I liked when he sweetly added "I guess" trying not to hurt mom😊

• 
  @BafusFamilyАй бұрын

  Me too 🥰

• 
  @bolyardhomephone7167Ай бұрын

  SLIKNNNYY DOGGGGG!!!

• 
  @BafusFamilyАй бұрын

  😂😂😂😂

• 
  @DraylobАй бұрын

  😂

• 
  @quiltychickАй бұрын

  My fear of heights kicked in just watching Mason! 😧

• 
  @BafusFamilyАй бұрын

  😂

• 
  @quiltychickАй бұрын

  I hope you guys are having a blast! ❤

• 
  @dalarice67Ай бұрын

  That for real?? Omg

• 
  @janeb.4693Ай 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?

• 
  @BafusFamilyАй 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?

• 
  @janeb.4693Ай бұрын

  @@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..

• 
  @BafusFamily6 күн бұрын

  That’s amazing to hear! Congratulations! I hope he’s doing well still. Mason is still doing great himself 😍

• 
  @njcoastie95Ай 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.

• 
  @BafusFamilyАй бұрын

  That’s awesome! I hope it all goes smoothly:) and thank you so much!

• 
  @jamesbitto2521Ай бұрын

  Great, because Disney says only autism

• 
  @BafusFamilyАй бұрын

  So great!

• 
  @smylex9916 күн бұрын

  They’re denying autistic persons, too.

• 
  @cocorunny6597Ай бұрын

  there are no longer preselects, they did away with that with the changes

• 
  @BafusFamilyАй бұрын

  That is great to know thank you for that information! Makes sense 🥰

• 
  @khuddle731Ай бұрын

  🤣🤣 sweet boy!

• 
  @DraylobАй бұрын

  😂

• 
  @Anarchy7774Ай бұрын

  Proud of u mason feel better soon little man

• 
  @BafusFamilyАй бұрын

  He’s doing so well thank you so much! 🥰

• 
  @candicenicole7669Ай бұрын

  Did you get Jack on steroids before starting the Exon skipping?

• 
  @BafusFamilyАй бұрын

  We did not. We haven’t put Jack on steroids yet 🥰

• 
  @meskeremkidanemariam88Ай бұрын

  God Always With You!!

• 
  @BafusFamilyАй бұрын

  🙌🏻🙏

• 
  @meganthomas99492 ай бұрын

  I have a three drawer system to keep all supplies organized. ❤

• 
  @BafusFamily2 ай бұрын

  That's a great idea!

• 
  @jaysimoes37052 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.

• 
  @BafusFamily2 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! 😊

• 
  @jaysimoes37052 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!

• 
  @BafusFamily6 күн бұрын

  He’s really improving so much now! Especially now that he’s about 6 months post treatment.

• 
  @jaysimoes37054 күн бұрын

  @@BafusFamily That is excellent news. I hope this will continue! And I see it this way: so Elevidys can wear off over the years. New muscle is created and no elevidys is present so it is not sure but expected. Meanwhile they are developping better medications. SOme trials are dealing in making full length dystrophine. Just one option. That is the holy grail. But other therapies that will ammeliorate the condition are coming soon it seems. So I would think: the better preserved his/their musles are, the more can be done in the future. Let's keep our fingers crossed!

• 
  @angelikascholten99832 ай бұрын

  Dann wären mir meine Haare egal gewesen

• 
  @ShahNawaz-kp3jn2 ай бұрын

  Hi Madam My three disabled brothers suffering from Disease Muscular Dystrophy I'm from Pakistan

• 
  @JadaBafus2 ай бұрын

  I hope my fellow DMD moms had a wonderful Mother’s Day! ❤

• 
  @sarabnagra34562 ай бұрын

  India Me jldi ave DMD ki medicine

• 
  @BafusFamily2 ай бұрын

  We do not know information on that, apologies

• 
  @rameshkannarameshkanna75222 ай бұрын

  Tell me short what is the result of DMD mam

• 
  @BafusFamily2 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

• 
  @bolyardhomephone71673 ай бұрын

  The scream at the end is HILARIOUS 😂

• 
  @lee-annegrandsire1653 ай бұрын

  I would love some information on the trauma group please!

• 
  @BafusFamily3 ай бұрын

  rebootrecovery.com/trauma/ I hope this helps!

• 
  @ianbolyard3 ай бұрын

  Shout out to the 34% gang!!! 💪🏻

• 
  @rameshkannarameshkanna75223 ай бұрын

  Any treatment to cure DMD mam

• 
  @BafusFamily3 ай бұрын

  Currently there is no known cure. We post updates each week documenting progress and our results with therapy.

• 
  @ren_ww3 ай бұрын

  why does he look like hes 34?

• 
  @BafusFamily3 ай бұрын

  🤣🤣

• 
  @Juliet-bd2zw3 ай бұрын

  He is WAY to cute ✋😩

• 
  @BafusFamily3 ай бұрын

  Thank you 🥰

• 
  @Juliet-bd2zw2 ай бұрын

  🩵🩵🩵

• 
  @user-bn6lf7bn2p3 ай бұрын

  😅😂

• 
  @BafusFamily3 ай бұрын

  🤣

• 
  @beeeeounka3 ай бұрын

  14 to 1000 real quick, you better watch him mama! 😂😂😂

• 
  @BafusFamily3 ай бұрын

  Agreed! 🤣

• 
  @Love-w9j2z3 ай бұрын

  His iyebroses

• 
  @Serenoj693 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!

• 
  @BafusFamily3 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.

• 
  @khuddle7313 ай бұрын

  My heart goes out to your family. Such an inspiration to find joy in everything.

• 
  @BafusFamily3 ай бұрын

  Thank you so much 😊

• 
  @rameshkannarameshkanna75223 ай бұрын

  What is the results

• 
  @BafusFamily3 ай бұрын

  We give the updates in the video, thank you for watching.

• 
  @laurabarrientos98463 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?

• 
  @BafusFamily3 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.

• 
  @jessicachacon3 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!!!!

• 
  @BafusFamily3 ай бұрын

  Thank you so much for the suggestion. We will look into this!

• 
  @candicenicole76694 ай бұрын

  Was your son doing exon skipping before getting Elevidys?

• 
  @BafusFamily4 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!

• 
  @lexward18344 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

• 
  @BafusFamily4 ай бұрын

  Looks like autcorrect got the best of your comment 🤣

• 
  @jaysimoes37054 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!

• 
  @BafusFamily4 ай бұрын

  Thank you so much! He is 5 years old and we will definitely continue to update his progress.

• 
  @vijayalakshmisaravanan78164 ай бұрын

  Hi sister how is your Mason health

• 
  @BafusFamily4 ай бұрын

  Thanks for asking- all of our latest updates are mentioned in the video.

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  @rameshkannarameshkanna75224 ай бұрын

  Any improvement mam DMD

• 
  @BafusFamily4 ай бұрын

  @@rameshkannarameshkanna7522 We just posted an update yesterday in the latest video

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  @rameshkannarameshkanna75224 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

• 
  @idahatoum34534 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! 😊

• 
  @BafusFamily4 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!