South Florida family discusses dealing with Marfan Syndrome

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  • Опубліковано 20 сер 2024

КОМЕНТАРІ • 55

  • @wraps777
    @wraps777 Рік тому +11

    I have Marfans. My version includes effects of my eyes, lungs, feet, bones & joints, and, a few other markers. I have broken 9 bones in 3 years, and have osteoporosis from head to toe. I too, have an aortic aneurysm, as well as lens implants. It's not fun, but God gives me strength for everyday. So, for the young man, I say: You hang in there, kind Sir. Fight the good fight. Take one day at a time. I'll be praying for you. :)

    • @fermignano89
      @fermignano89 11 місяців тому +2

      God bless you brother, i dont have those kind of problems but still have half of your strenght i wish have.

  • @ludicrousmodel3173
    @ludicrousmodel3173 Рік тому +37

    Honestly if I knew I had marfan syndrome, I personally wouldn't have kids because I wouldn't want to risk ruining my kid's life.

    • @BruceWayne-jy6rz
      @BruceWayne-jy6rz Рік тому

      Lol

    • @phenomdesigns4006
      @phenomdesigns4006 Рік тому +7

      This is literally my thought process, as someone who has had 11 surgeries due to this syndrome and has experienced the worst kind of pain i definitely would not want to inflict this onto my children.

    • @ricwhite612
      @ricwhite612 11 місяців тому

      i have marfans and its fine because no one wants to have kids with me because of it anyway. guess ill just be alone lol

    • @flameofkamura
      @flameofkamura 7 місяців тому

      @@ricwhite612cap 🧢

    • @grimace4257
      @grimace4257 3 дні тому

      @@phenomdesigns4006
      What’s the worst pain? I’ve had half a dozen chest drains with just local anaesthesia and pleurodesis on both sides. I think you’re being a chicken.

  • @josephchileshe7335
    @josephchileshe7335 3 місяці тому +3

    One day the kid will be like, you knew I would turn out like this.. still you brought me here to suffer.

    • @traviro3329
      @traviro3329 10 днів тому

      I mean if they’re mature they’ll realize it is better to live this life than never exist at all.

  • @divydumdrophello
    @divydumdrophello 2 роки тому +25

    Disabled people are all WORTHY of life. Marphan´s is POTENTIALLY deadly...not deadly. With intervention, I have been advised by my own doctors that I can LIVE a NORMAL life expectancy with some help and support, not extended hospitalizations, etc..
    I am getting a diagnosis of a mystery illness that could be Marphans. I am GLAD MY PARENTS didn´t listen to the odds given by doctors and their family history and instead gave me a HAPPY and productive LIFE even though I am DISABLED.

  • @RyoTamashī
    @RyoTamashī 2 місяці тому

    He seems so sweet I hope he's ok

  • @prueXo
    @prueXo Рік тому +22

    Disgraceful parents. Wishing the kids all the best

    • @LynxPlaysYT
      @LynxPlaysYT Рік тому +1

      The only person disgraceful is you.

    • @LynxPlaysYT
      @LynxPlaysYT Рік тому +4

      @@prueXo I cannot relate.

    • @MikeT-in1eg
      @MikeT-in1eg Рік тому +1

      @@prueXothey can have kids they just have to be smart and go to prenatal care. This would allow which of their kids have marfans and they can chose to terminate the pregnancy accordingly.

    • @marc_2690
      @marc_2690 6 місяців тому +1

      Pro-Eugenics?

    • @louvendran7273
      @louvendran7273 4 місяці тому

      ​@@marc_2690It's a slippery slope mate. 😂

  • @davidbohorquez2053
    @davidbohorquez2053 3 роки тому +40

    "That was a risk WE were willing to take"? How selfish is that, you just can't bet on people lives like that, specially your own children. Wtf

    • @Dee--Jay
      @Dee--Jay Рік тому +14

      Everyone is entitled to their own children... disabled or not. as if only completely healthy people can have kids

    • @jassorjasmine7092
      @jassorjasmine7092 Рік тому

      So deaf people should not have kids ? Blind people and achromates too ? People with many cases of cancer in their families too ? What about people with a history of asthma ? People of weak constitution etc. ? So who ever is not fit enough s
      Must not have kids... Eugenics shall never be brought back. This ideology is one of the worst humanity has ever created

    • @justaturky2890
      @justaturky2890 Рік тому +5

      @@Dee--Jay they coulve adopted

    • @Dee--Jay
      @Dee--Jay Рік тому +1

      @@justaturky2890 Yes they could have adopted but they didn't and that's their choice. Not everybody wants to adopt, most people want their own seed

    • @gppoem3344
      @gppoem3344 4 місяці тому +1

      I know. I was floored hearing this mom say that. Of course it’s not her going to go through a life of hell. What a mom!

  • @RichardM1366
    @RichardM1366 6 місяців тому +1

    I was told I would never see 40. I am 57 going on 58 and I am still going strong!

  • @RaffaelloLorenzusSayde
    @RaffaelloLorenzusSayde 2 місяці тому

    Is that why my wrist is smaller than my large hands?

  • @rayslife4k
    @rayslife4k Рік тому +3

    I used to put my pills in a grape and chew the grape 😂 now I can swallow

  • @Weeklong_Seagull
    @Weeklong_Seagull Рік тому

    For years I always wondered why my scoliosis was so much worse than everybody else is and why all my joints dislocate so easy. Super beta prostate I've always been very skinny

  • @firerunner275
    @firerunner275 2 роки тому +33

    Wow horrible people gambling with their children’s health

    • @diegovilla3879
      @diegovilla3879 Рік тому +1

      I mean bro let them have kids and I’m not gonna argue with someone like you but don’t get me wrong I can turn Marfan syndrome into a strength by peer pressuring my entire body but not in a bad way

  • @irenedavo3768
    @irenedavo3768 Рік тому

    Send BIG HUG

  • @ferrypanda
    @ferrypanda 2 роки тому +30

    Incredibly selfish parents

  • @coolcat6103
    @coolcat6103 Місяць тому

    So they had kids?

  • @gppoem3344
    @gppoem3344 4 місяці тому +2

    It’s a risk you’re willing to take? What about bringing a life into the world full of torture to that kid? Not cool.

  • @gabricks1224
    @gabricks1224 8 місяців тому +1

    That’s my uncle aunt and cousins!

  • @user-us3pv7jt8y
    @user-us3pv7jt8y 6 місяців тому +4

    Disgraceful parents.

  • @karlpatureau1936
    @karlpatureau1936 5 місяців тому

    Thank you Jesus Christ for letting me know I probably have this disorder. Or the doctor. Or both, thank you for sharing. Space Aliens. That's all.

  • @RaffaelloLorenzusSayde
    @RaffaelloLorenzusSayde 2 місяці тому

    O

  • @Shinigamigaz
    @Shinigamigaz 3 місяці тому

    No-one with Marfan Syndrome should get married, it is a death sentence.
    Be careful babies, you are stronger than you could ever imagine, look after your hearts and protect them.
    I know you, I know your suffering and I know why.
    Self love❤ is all you need and I will love all of you always because you all take on so much, I feel it.
    I have Marfan syndrome, I am 34 years old and I have overcome my disability and I'm only getting stronger and I believe you all have the power to do the same.
    Increase your energy, be fearless, be strong.
    You are loved more than you know.
    Whatever happens you are protected and you will learn in time how powerful you really are.
    Understanding duality is essential, we have both light and dark aspects of our subconscious and our thoughts change the world.
    Be the change you want to see.
    Be the miracle❤

  • @samngmusic
    @samngmusic 2 місяці тому

    Parents should be ashamed. Why bring children knowing they have a literal 50% chance to be sick. I would have a hard time understanding the logic even if the percentage chance was lower but at 50%, to still bring children, thats absurd. Unbelievable. I wish people could monitor who is allowed to parent and who isn't. Absolutely disgusting.

    • @grimace4257
      @grimace4257 3 дні тому

      Relax babes, we’re fine 😂