Sam's Story - Living with a Rare Disease

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  • เผยแพร่เมื่อ 23 ธ.ค. 2024

ความคิดเห็น • 59

  • @ellenfielding73
    @ellenfielding73 10 หลายเดือนก่อน +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 หลายเดือนก่อน +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 หลายเดือนก่อน +1

      🙏🙏🙏 god bless her

    • @ellenfielding73
      @ellenfielding73 8 หลายเดือนก่อน +1

      I just had one sister with Hurlers.

  • @JessBecause77
    @JessBecause77 2 ปีที่แล้ว +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. ❤

    • @visionvixxen
      @visionvixxen 8 หลายเดือนก่อน +1

      🙏🙏🙏

  • @cindysemblante4411
    @cindysemblante4411 2 ปีที่แล้ว +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

  • @cynthiablandford6213
    @cynthiablandford6213 2 ปีที่แล้ว +2

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

  • @missymunro7691
    @missymunro7691 2 ปีที่แล้ว +16

    He's adorable & his mad hair is fabulous xx

  • @wanya_telborn
    @wanya_telborn 2 ปีที่แล้ว +3

    Oh he is is pure sweetness!

  • @wendywozniak6360
    @wendywozniak6360 2 ปีที่แล้ว +3

    What a sweetheart!

  • @ourtimetoshine1341
    @ourtimetoshine1341 2 ปีที่แล้ว +8

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

  • @chab1rd155
    @chab1rd155 2 ปีที่แล้ว +11

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

  • @evelinagleisner930
    @evelinagleisner930 2 ปีที่แล้ว +6

    So sad, hope he can live as long as possible

    • @teijaflink2226
      @teijaflink2226 ปีที่แล้ว

      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.

  • @icidive3890
    @icidive3890 2 ปีที่แล้ว +8

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

  • @annmariedelgrande1339
    @annmariedelgrande1339 2 ปีที่แล้ว +3

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

  • @vandettillman3791
    @vandettillman3791 2 ปีที่แล้ว +4

    Praying for u Sam

  • @InvisibleVicky
    @InvisibleVicky 2 ปีที่แล้ว +3

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

    • @shondamorgan9410
      @shondamorgan9410 ปีที่แล้ว

      all are mucopolysaccharidosis disorder.. hurler being the most severe

  • @brendaseager7371
    @brendaseager7371 2 ปีที่แล้ว +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.

  • @Candileja.
    @Candileja. 2 ปีที่แล้ว +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 ปีที่แล้ว

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

  • @sawdust2556
    @sawdust2556 2 ปีที่แล้ว +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 ปีที่แล้ว +3

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

    • @hyperv1016
      @hyperv1016 2 ปีที่แล้ว +1

      @@miakodemelo get help...

    • @hyperv1016
      @hyperv1016 2 ปีที่แล้ว

      God bless!! 😆

  • @patriciabuttner7511
    @patriciabuttner7511 2 ปีที่แล้ว +1

    Great story with a beautiful ending!

  • @alwaysbekindandhappy6874
    @alwaysbekindandhappy6874 ปีที่แล้ว

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

  • @maskedgamer7565
    @maskedgamer7565 2 ปีที่แล้ว +2

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

  • @wajid4390
    @wajid4390 2 ปีที่แล้ว +1

    God bless u dearrr

  • @MsPat.212
    @MsPat.212 2 ปีที่แล้ว

    Prayers, 🙏Healings. And Blessings. Amen.

  • @oldonetwoable
    @oldonetwoable 2 ปีที่แล้ว +1

    What a darling.

  • @ingridlinton5659
    @ingridlinton5659 2 ปีที่แล้ว

    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

  • @andreaparke4899
    @andreaparke4899 7 วันที่ผ่านมา

    How is he doing now.?

  • @kathyinwonderlandl.a.8934
    @kathyinwonderlandl.a.8934 2 ปีที่แล้ว +3

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

  • @PeriwinklePotter
    @PeriwinklePotter 3 หลายเดือนก่อน

    ❤❤❤❤❤❤❤

  • @ServiceDogRosie
    @ServiceDogRosie 2 ปีที่แล้ว

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

    • @shondamorgan9410
      @shondamorgan9410 ปีที่แล้ว

      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

  • @purplebutterflies3750
    @purplebutterflies3750 2 ปีที่แล้ว +2

    God Bless little Sam🙏🏽💕

  • @KeruToL
    @KeruToL 2 ปีที่แล้ว

    Now he can be of age to become a Pokémon master

  • @mithinie
    @mithinie 2 ปีที่แล้ว

    ❤️

  • @raerae3844
    @raerae3844 2 ปีที่แล้ว

    💚

  • @KhalidBurgerPoint
    @KhalidBurgerPoint 25 วันที่ผ่านมา

    Is ka koi alaj hy

  • @KhalidBurgerPoint
    @KhalidBurgerPoint 25 วันที่ผ่านมา

    My hmara bacha bi hy

  • @yomama8873
    @yomama8873 2 ปีที่แล้ว +1

    💖💖💖💖💖💖💖

  • @loriijanee
    @loriijanee ปีที่แล้ว

    prayers ops

  • @LectronCircuits
    @LectronCircuits 2 ปีที่แล้ว

    Bummer to be in such a bad way. Crikey!

  • @JazzyGinger1
    @JazzyGinger1 2 ปีที่แล้ว +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 ปีที่แล้ว

    prwyerw ops

  • @monikamichaelis5019
    @monikamichaelis5019 2 ปีที่แล้ว

    Did the parents take drugs in their youth?

    • @Sabouma28
      @Sabouma28 2 ปีที่แล้ว

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

    • @taliahjefferson4966
      @taliahjefferson4966 2 ปีที่แล้ว +5

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

    • @xirisx1988
      @xirisx1988 2 ปีที่แล้ว

      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 ปีที่แล้ว

      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

  • @sunshinemcfarland6445
    @sunshinemcfarland6445 2 ปีที่แล้ว +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 ปีที่แล้ว

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