Sam's Story - Living with a Rare Disease

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  • Опубліковано 20 гру 2024

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  • @JessBecause77
    @JessBecause77 2 роки тому +8

    My niece passed away from Hurlers in 1995. She was 3. It makes me so happy to see how far treatments have come and how different the prognosis is now. ❤

  • @cindysemblante4411
    @cindysemblante4411 2 роки тому +16

    Sam had really been through the wringer. Poor little man. I can’t imagine what this adventure has felt like as his parents. So happy the 2nd transplant worked and that your beautiful boy is now thriving

  • @ellenfielding73
    @ellenfielding73 10 місяців тому +5

    Oh he’s so cute!! My sister had Hurlers Syndrome. As soon as I saw him I knew what he had. We decided to not do the bone marrow transplant because she had so many different things going on. She had already spent enough time in the hospital. She was diagnosed at 6 months and passed just shy of her 7th birthday.

    • @rafida834
      @rafida834 9 місяців тому +1

      How many brothers and sisters you have?and how many brothers and sisters suffer from hurler syndrome?I am from bangladesh.plz reply

    • @visionvixxen
      @visionvixxen 8 місяців тому +1

      🙏🙏🙏 god bless her

    • @ellenfielding73
      @ellenfielding73 7 місяців тому +1

      I just had one sister with Hurlers.

  • @cynthiablandford6213
    @cynthiablandford6213 2 роки тому +2

    Have a beautiful life little fella!!🥰😍💖💖💖💖💖

  • @missymunro7691
    @missymunro7691 2 роки тому +16

    He's adorable & his mad hair is fabulous xx

  • @wendywozniak6360
    @wendywozniak6360 2 роки тому +3

    What a sweetheart!

  • @wanya_telborn
    @wanya_telborn 2 роки тому +3

    Oh he is is pure sweetness!

  • @chab1rd155
    @chab1rd155 2 роки тому +11

    God bless his little heart! I pray he lives a long healthy life!

  • @ourtimetoshine1341
    @ourtimetoshine1341 2 роки тому +8

    Good on you Sam your a little trooper bless you sweetheart ♥️

  • @icidive3890
    @icidive3890 2 роки тому +8

    Such a beautiful ending, prayers for you Sam, and your family. Stay blessed

  • @annmariedelgrande1339
    @annmariedelgrande1339 2 роки тому +3

    🙏🏻♥️🙏🏻♥️🙏🏻♥️🙏🏻♥️🙏🏻for your little boy and your Family

  • @patriciabuttner7511
    @patriciabuttner7511 2 роки тому +1

    Great story with a beautiful ending!

  • @evelinagleisner930
    @evelinagleisner930 2 роки тому +6

    So sad, hope he can live as long as possible

    • @teijaflink2226
      @teijaflink2226 Рік тому

      I think with an early bone married transplant that you can live pretty much a normal life (perhaps with some learning difficulties), it's amazing as this was a death sentence not too long ago.

  • @brendaseager7371
    @brendaseager7371 2 роки тому +2

    He is so cute. I know how hard it is to have a child you don’t know how long they will be around, and it prays on you steady, however you get to love him so much when you see what he endures to stay alive.
    I pray your little guy is with you until he reaches old age.

  • @InvisibleVicky
    @InvisibleVicky 2 роки тому +3

    I worked in a childrens hospice. Hurlers, San Felipo and hunters are all very similar. With features too. Amazing kids

    • @shondamorgan9410
      @shondamorgan9410 Рік тому

      all are mucopolysaccharidosis disorder.. hurler being the most severe

  • @vandettillman3791
    @vandettillman3791 2 роки тому +4

    Praying for u Sam

  • @sawdust2556
    @sawdust2556 2 роки тому +4

    What a 💕💕💕💕sweetheart! Thank you to God, the doctors, the program for stem cell transplant, and for parents and siblings like Sam’s!🙏🏼

    • @miakodemelo
      @miakodemelo 2 роки тому +3

      “Thank you to god”. Seriously? Didn’t god make him this way? God looks like he messed up, again.

    • @hyperv1016
      @hyperv1016 2 роки тому +1

      @@miakodemelo get help...

    • @hyperv1016
      @hyperv1016 2 роки тому

      God bless!! 😆

  • @Candileja.
    @Candileja. 2 роки тому +5

    Él crecerá, será un adulto independiente y vivirá como cualquier otro adulto con algún problema de salud. su padre y su madre ya acostumbrados no sufrirán más . Dios los bendiga

    • @mostlphymeziane9747
      @mostlphymeziane9747 Рік тому

      Are u chur becaus i have 3 children liké that .i have lotof problems

  • @alwaysbekindandhappy6874
    @alwaysbekindandhappy6874 Рік тому

    A beautiful family and Sam is adorable 💕💕💞💓💗💗💗

  • @MsPat.212
    @MsPat.212 2 роки тому

    Prayers, 🙏Healings. And Blessings. Amen.

  • @wajid4390
    @wajid4390 2 роки тому +1

    God bless u dearrr

  • @maskedgamer7565
    @maskedgamer7565 2 роки тому +2

    Man, the father looks exhausted.
    Those parents been through alot.

  • @oldonetwoable
    @oldonetwoable 2 роки тому +1

    What a darling.

  • @kathyinwonderlandl.a.8934
    @kathyinwonderlandl.a.8934 2 роки тому +3

    Such a wonderful story that had a ending so happy and positive🥰

  • @ingridlinton5659
    @ingridlinton5659 2 роки тому

    I think when the kid catch that both his parents have to be care for yours it's sad but to God be the glory

  • @purplebutterflies3750
    @purplebutterflies3750 2 роки тому +2

    God Bless little Sam🙏🏽💕

  • @andreaparke4899
    @andreaparke4899 3 дні тому

    How is he doing now.?

  • @PeriwinklePotter
    @PeriwinklePotter 3 місяці тому

    ❤❤❤❤❤❤❤

  • @KeruToL
    @KeruToL 2 роки тому

    Now he can be of age to become a Pokémon master

  • @ServiceDogRosie
    @ServiceDogRosie 2 роки тому

    Prayers good to see him flourish and grow. Does he have a form of dwarfism like achondroplasia or psuedoachon? Or hydrocephalus

    • @shondamorgan9410
      @shondamorgan9410 Рік тому

      some have hydrocephalus and yes its another type of drarfism .. enzyme replacement and bmt is the treatment . they actually stop growing about age 3 without treatment if i remember right ..research has come so far

  • @KhalidBurgerPoint
    @KhalidBurgerPoint 21 день тому

    Is ka koi alaj hy

  • @KhalidBurgerPoint
    @KhalidBurgerPoint 21 день тому

    My hmara bacha bi hy

  • @raerae3844
    @raerae3844 2 роки тому

    💚

  • @mithinie
    @mithinie 2 роки тому

    ❤️

  • @yomama8873
    @yomama8873 2 роки тому +1

    💖💖💖💖💖💖💖

  • @loriijanee
    @loriijanee Рік тому

    prayers ops

  • @LectronCircuits
    @LectronCircuits 2 роки тому

    Bummer to be in such a bad way. Crikey!

  • @JazzyGinger1
    @JazzyGinger1 2 роки тому +1

    May I share an Old Testament Verse with you from Daniel 7:14 "And there was given him dominion, and glory, & a Kingdom, that all people, nations, &, should SERVE Him; his dominion is an Everlasting dominion, which shall not pass away, and his kingdom shall not pass away, and His Kingdom that which shall not be destroyed."
    God the Father loves you so much that He sent Holy Sinless Jesus (His Holy Son) to earth to be born of a virgin.Then, to grow up and die on a cross for our sins. He was in the tomb for 3 days, then Father God raised Holy and Sinless Jesus Christ (Y'shua) to Life! He appeared to people and went back to Heaven. We must receive Sinless Jesus sincerely to be God's child(John 1:12).After we get saved by grace through faith in Christ, if we truly love the Lord Jesus Christ, then we will obey Jesus(John 14:15). Mark 1:15 "And saying, the time is fulfilled, and the kingdom of God is at hand: Repent ye, and believe the gospel." Jesus said in John 14:15 "If you love Me, keep My commandments. "There's a real hell. It says in Revelation 21:8 "But for the cowardly, & unbelieving, & abominable, and murderers, & immoral persons sorcerers & idolaters & all liars, their part will be in the lake that burns with fire & brimstone..." Please sincerely receive Holy Jesus & put your true faith and trust in Him today and please repent. Will you have a Real encounter with Holy Lord Jesus (Y'shua is His Hebrew Name) & stay in a Genuine relationship with Him daily please?

  • @loriijanee
    @loriijanee Рік тому

    prwyerw ops

  • @sunshinemcfarland6445
    @sunshinemcfarland6445 2 роки тому +3

    Jesus is the cure to these different diseases and famines. It’s sad that many people don’t know about him or don’t care about him. Help us
    Lord. God bless him and his family.❤️🙏🏼❤️🙏🏼

    • @xirisx1988
      @xirisx1988 2 роки тому

      If he is the cure then why are there still people born with illnesses?

  • @monikamichaelis5019
    @monikamichaelis5019 2 роки тому

    Did the parents take drugs in their youth?

    • @Sabouma28
      @Sabouma28 2 роки тому

      what kind of a shitty comment is that....

    • @taliahjefferson4966
      @taliahjefferson4966 2 роки тому +5

      That wouldn't make any difference!! Its a genetic mutation 🧘‍♀️

    • @xirisx1988
      @xirisx1988 2 роки тому

      Did your parents do drug for making such a stupid comment. If you really watched the video you would know it's a genetic disorder. The parents passed a faulty gene onto him.

    • @shondamorgan9410
      @shondamorgan9410 Рік тому

      its autosomal recessive . but parents have the same defective gene.. 1 in 4 chance with each child they have together the child will be affected with it ..the other kids that didnt have it are carriers of the gene