Sam's Story - Living with a Rare Disease
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- เผยแพร่เมื่อ 30 พ.ค. 2024
- Meet Sam 💙
He’s a bubbly, social and playful four-year-old boy, but for his parents it has been a long and heart-breaking journey to reach a point where Sam is doing so well.
Sam was born with an extremely rare condition called Mucopolysaccharidosis (MPS1), a genetic disorder that leads to organ damage. There is no cure, but enzyme infusions and bone marrow transplant help slow disease progression.
“My heart sank, it was just pure heartbreak. Getting told that your son has a condition where they normally don’t survive and you had to do something so high risk, it’s pretty scary” - Sam’s Mum, Bibiana.
Sam’s condition is extremely rare, but he is not alone. More than 63,000 West Australian children are living with a rare disease, and they need your support.
Your donation this tax time will help fund research and care that is transforming the lives of WA children and their families.
Join the fight. Donate now: bit.ly/3FwiktV
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. ❤
🙏🙏🙏
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.
How many brothers and sisters you have?and how many brothers and sisters suffer from hurler syndrome?I am from bangladesh.plz reply
🙏🙏🙏 god bless her
I just had one sister with Hurlers.
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
Have a beautiful life little fella!!🥰😍💖💖💖💖💖
He's adorable & his mad hair is fabulous xx
What a sweetheart!
Oh he is is pure sweetness!
Good on you Sam your a little trooper bless you sweetheart ♥️
God bless his little heart! I pray he lives a long healthy life!
God bless ops
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
Are u chur becaus i have 3 children liké that .i have lotof problems
Such a beautiful ending, prayers for you Sam, and your family. Stay blessed
prayers ops
So sad, hope he can live as long as possible
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.
I worked in a childrens hospice. Hurlers, San Felipo and hunters are all very similar. With features too. Amazing kids
all are mucopolysaccharidosis disorder.. hurler being the most severe
What a 💕💕💕💕sweetheart! Thank you to God, the doctors, the program for stem cell transplant, and for parents and siblings like Sam’s!🙏🏼
“Thank you to god”. Seriously? Didn’t god make him this way? God looks like he messed up, again.
@@miakodemelo get help...
God bless!! 😆
Man, the father looks exhausted.
Those parents been through alot.
Praying for u Sam
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.
🙏🏻♥️🙏🏻♥️🙏🏻♥️🙏🏻♥️🙏🏻for your little boy and your Family
Great story with a beautiful ending!
A beautiful family and Sam is adorable 💕💕💞💓💗💗💗
What a darling.
Prayers, 🙏Healings. And Blessings. Amen.
God bless u dearrr
God Bless little Sam🙏🏽💕
Such a wonderful story that had a ending so happy and positive🥰
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
❤️
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Prayers good to see him flourish and grow. Does he have a form of dwarfism like achondroplasia or psuedoachon? Or hydrocephalus
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
Now he can be of age to become a Pokémon master
💖💖💖💖💖💖💖
prayers ops
Bummer to be in such a bad way. Crikey!
prwyerw ops
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?
Did the parents take drugs in their youth?
what kind of a shitty comment is that....
That wouldn't make any difference!! Its a genetic mutation 🧘♀️
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.
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
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.❤️🙏🏼❤️🙏🏼
If he is the cure then why are there still people born with illnesses?