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Duchenne with a Future: The Power to Live

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  • čas přidán 4. 09. 2024

Komentáře • 53

  • @dakotaf2773
    @dakotaf2773 Před 9 lety +34

    I have duchenne MD I'm almost 21 and still walking

    • @t_yt3266
      @t_yt3266 Před 7 lety +2

      Dakota F wooow your lucky I stopped walking at 13

    • @dakotaf2773
      @dakotaf2773 Před 7 lety +5

      i broke my femur in january I'm still learning how to walk again its been very hard..
      this diseases is just so cruel :(
      but you just got to keep fighting!!

    • @lovetaylorswiftjm
      @lovetaylorswiftjm Před 7 lety

      Well you're lucky.

    • @lovetaylorswiftjm
      @lovetaylorswiftjm Před 7 lety

      Same I stopped at 13.

    • @keto327
      @keto327 Před 7 lety +1

      Dakota F
      you are very lucky

  • @lavenderchalcedony535
    @lavenderchalcedony535 Před 9 lety +18

    My 2.5 year old son was diagnosed 2 weeks ago. I have been praying for hope every day. This video delivered exactly that. Thank you!

    • @zstrobeck
      @zstrobeck Před 9 lety +9

      Bobbi Sullivan I am 25 years old and have DMD. The fact that your son is so young is great as it gives him time while new treatments/possible cures are being developed. There are a few drugs in trial to slow the progression of the disease and possibly cure it. Check out ptc-124 on google, this is one of the drugs in trial now.
      (it might be a good idea to take your son to a geneticist at a leading hospital for muscular dystrophy research to learn more about your sons condition.

    • @shoppingGirl
      @shoppingGirl Před 9 lety +1

      Bobbi Sullivan My son 3 1/2

    • @latasharobinson1100
      @latasharobinson1100 Před 3 lety

      Hang in there I know it's hard im in yr same position but I have a friend who gives me hope her sin has it as well and they said he wouldn't make it to 14 he's 18 so it definitely has given me hope for my boy

    • @jamiedelbruegge2114
      @jamiedelbruegge2114 Před rokem +1

      I’ve always heard life expectancy for DMD was late teens so when I found out my grandson would have it I cried for all the things he would not get to accomplish or experience. But watching this has completely lightened my heart. 💖

  • @lovetaylorswiftjm
    @lovetaylorswiftjm Před 7 lety +13

    I am 24 and I'm still here. How old are you lot?

  • @janineschindler2966
    @janineschindler2966 Před 10 měsíci +3

    This was 2011 the year one of my son's died of dmd he was 25. I had 2 boys. My other son died 2014. He was 31 years old. I wish I could have been able to find some kind of support system. Someone to talk to when they were alive that really understood. Because unless you have this disease or work with someone with this disease ...you really do not know what it's like and can understand.

  • @mathildes8583
    @mathildes8583 Před 9 lety +7

    Thank you for posting this video, I will start working on this disease in a month and it's always important to watch real persons who struggle everyday.

  • @officialdrrahulsharma1343

    I am also a patient of duchenne muscular dystrophy but I am also a MBBS student (doctor ).I Am 20year old and still walking.

  • @lic2kil007
    @lic2kil007 Před 9 lety +9

    There is a man by the name of Johnny Lombardo living with his parents in Orange Co. California. He is in his mid 50's he has Duchenne. He is beaten the odds on how long you can live.

    • @joselemus3079
      @joselemus3079 Před 4 lety +4

      I will pray for all the kids in the world who has this disease like my nephew recently

    • @cutedpanda00
      @cutedpanda00 Před 4 lety +1

      @@joselemus3079 i have bmd

    • @kantilalbhanushali7572
      @kantilalbhanushali7572 Před 3 lety

      @@joselemus3079 I like to inform you that we got good improvement in muscular dystrophy patients cases for further information please contact me on WhatsApp 91 9322303271..
      Within a month you will find relief in pain and improvement in body movement

  • @jamellwashington3926
    @jamellwashington3926 Před 8 lety +9

    I got it too in need of prayer

    • @mahtazdin
      @mahtazdin Před 8 lety +1

      my son and brother has it too. i hope we can get through this together.

    • @trevorsinclair9949
      @trevorsinclair9949 Před 6 lety

      jamell washington You’ve got mine!

    • @batuhandemirel3787
      @batuhandemirel3787 Před 5 lety

      @martha You shouldn't have had a son, if your brother has DMD.

    • @cutedpanda00
      @cutedpanda00 Před 4 lety

      @@mahtazdin hello martha

    • @latasharobinson1100
      @latasharobinson1100 Před 3 lety

      I'll pray for you everyday. What else can I do to help you?

  • @shoppingGirl
    @shoppingGirl Před 9 lety +4

    This is a really awesome video, thank you so much for doing this and sharing. I needed this hope,

  • @ivankoho7311
    @ivankoho7311 Před 2 lety +3

    I know this case is too hard and make many people be burden. But in my case..i surrender to lord Jesus. And i believe everything is gonna be ok. Jesus is the owner of life in the universe. Nothing is ever impossible for God. just believe in your faith.
    Because faith the size of a small seed can move mountains.
    pray, believe, do the best for Him and all will be beautiful in His time . In Jesus name,,!! Amen.
    God bless us 🙏.

  • @HanifKhan-ui7ht
    @HanifKhan-ui7ht Před rokem

    My grandson have been diagnosed with Duchesne muscular dystrophy he ten years of age and could hardly walk from Guyana 🇬🇾

  • @virpaulsohi815
    @virpaulsohi815 Před 4 lety +2

    My brother died due to DMD. Now my sister son has DMD

    • @kantilalbhanushali7572
      @kantilalbhanushali7572 Před 3 lety

      I'm kantilal Bhanushali from madhapar Nava vaas Kutch Bhuj Gujarat India I like to inform you that we got good improvement in SMA DMD LGMD BMD patients cases with the help of acupressure massage therapy healing process power meditation and ayurvedic medicines for further information please contact me on whatsapp 91 9322 30327 1

    • @latasharobinson1100
      @latasharobinson1100 Před 3 lety

      Be strong

    • @PBXAKSH09
      @PBXAKSH09 Před rokem

      Your brother age

  • @hannachrustowska4032
    @hannachrustowska4032 Před 4 lety +3

    I would be very happy if there is someone who would be able to sell me that electric wheelchair for little money for my 14 years old grandson who cant walk since 2 years. I think whellchair like these could help him to live normally.

    • @hannachrustowska4032
      @hannachrustowska4032 Před 4 lety

      If there is someone message me please on a mail grazyna19734@wp.pl

    • @cutedpanda00
      @cutedpanda00 Před 4 lety

      Here in the Philippines even if you have power chair you can't live normally people here will stare at you and mock you for getting md i have beckers md

    • @kantilalbhanushali7572
      @kantilalbhanushali7572 Před 3 lety

      @@cutedpanda00 if you are ready to spare about 5 hrs a day for one month then contact me on WhatsApp 91 9322303271.
      Within a month you will find relief in pain and improvement in body movement

    • @cutedpanda00
      @cutedpanda00 Před 3 lety

      @@kantilalbhanushali7572 hmm scam?

    • @kantilalbhanushali7572
      @kantilalbhanushali7572 Před 3 lety +1

      @@cutedpanda00 dear if you know that anyone is muscular dystrophy patients tell them to contact me i will guide them what to do. If anyone ready to spare about 5 hrs a day for one month they will find relief in pain and improvement in body movement if they do regular then day by Day get more and more improvement

  • @azpta777
    @azpta777 Před 8 lety +1

    whats the name of music? 53:55

  • @rabiamalik1195
    @rabiamalik1195 Před 9 lety +1

    This video is amazing thankyou!
    But what i dont understand is that these people are going to college, got their Certificare/license and stuff but my brother has duchenne too and they said he cant go to college.
    Btw he got in a wheelchair 2,5years ago he is 18 now .. Like is that possible ?

    • @junbh2
      @junbh2 Před rokem

      I see this was posted 8 years ago but I hope your brother eventually found a way to get the education he wanted and I hope he's still OK and having a good life.

    • @junbh2
      @junbh2 Před rokem +1

      Whoever it was who told your brother that, shouldn't have said that.

    • @stjohnssoup
      @stjohnssoup Před 6 měsíci

      What’s happening now

  • @mariaalston8545
    @mariaalston8545 Před 9 lety +1

    Do you have a u tube page for Becker's Muscles Dystrophy

    • @DefyingDystrophy
      @DefyingDystrophy Před 9 lety

      I have Beckers Muscular Dystrophy and I am curing myself. Check out my channel.

    • @mariaalston8545
      @mariaalston8545 Před 9 lety

      Beat Muscular Dystrophy wow