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Hello, We received Elevidis 6 weeks ago. What is your son's Creatine Kinase level? Thanks!

It was awesome to meet you and your family! I enjoyed making friends who understand this disability. It's cool to be on RUclips!

I’m a carrier too.

Aww this is such a great video!!❤

Did he have a loss of appetite at all after receiving the gene therapy?

Backpack and a lunch box and a water bottle

Wow, that's a real miracle, Mason does the stairs like every "normal" boy at his age. Asesome...

He this not have room to sleep in his bed he have a lot toys on his you need to blow your nose do you have a cold are a running nose what is dmd stand for bed animal toys how old is your boys what grade in school how did he broke his foot did he get a x-ray

My kid only wears afo’s during the night.

Jack's face on the log ride 🤣🤣🤣

Sorry should have watched the whole video before commenting. These are wonderful shoes, the kids can do it themselves!

Look into BILLY shoes

im 19 and have high functioning autism, i STRUGGLED to get das. i did the call with my behavioral therapist, 2 healthcare professions said no so i had to get a coordinator on who got a 3rd healthcare professional that finally said yes. the entire call took over an hour ( 5 minutes waiting in the queue ). it was very stressfull for me and i love disney so much but the thought of having to do that again really upsets me, maybe it will be easier next time? so glad you got it though, DAS really does help and do wonders! i hope yall had fun :)

What is the name of the facility in PA?

I highly recommend a port. Drew used to have the worst 2 yr old anxiety and fear, and screaming. The port makes it so much easier and no crying

Inspiring! So much love in this family. Please provide an update on weekend dosing. We are looking at starting weekend dosing for our 5 year old. Blessings to you and your family.

I live in the UK and we are going to Disney World and Universal Studios in 9 days time! I have primary progressive multiple Sclerosis and have had it for 11yrs, about 5 yrs ago when we last went to Disney world DAS pass was so much easier, but we will be trying to contact Disney World to see if we can get it! I’m in a wheelchair 90%of my time and my bladder can wake up at anytime and say I need to go now! And I don’t have long to hang around! Hopefully we will get in??

Emflaza?

What is afo stand for

Bryan's Ribs ™️ 🤣🙌🏻

Mason health is ok

They no longer offer pre-selections. Glad you got approved. Thank you for letting us know that you can push a little bit in case they try to quickly turn you away. Will be applying for a toddler with autism for the first time.

7:28-7:29, that’s the sound from all Mario games!! Mama Mia!

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

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.

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

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

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

How is Mason doing with the night splints?

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

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. ❤🏰

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 ❤😊

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

SLIKNNNYY DOGGGGG!!!

😂

My fear of heights kicked in just watching Mason! 😧

I hope you guys are having a blast! ❤

That for real?? Omg

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?

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.

Great, because Disney says only autism

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

🤣🤣 sweet boy!

😂

Proud of u mason feel better soon little man

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

God Always With You!!

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

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.

Dann wären mir meine Haare egal gewesen