The Incredible Teen With Butterfly Skin | BORN DIFFERENT
Вставка
- Опубліковано 30 вер 2024
- SUBSCRIBE to Truly: bit.ly/Oc61Hj
DESPITE being born with an incredibly painful skin disease - the same disease that killed his older brother, Marky Jaquez is hoping to inspire others with his positive outlook on life. Marky, 19, was born with Epidermolysis Bullosa, often referred to as EB. The condition affects anywhere that he has skin and internally too, such as his eyes, mouth and organs. Marky’s skin is so fragile it could blister with the slightest touch.
Follow Marky's story here:
/ melissa_2010
Videographer: Nathan Johnson
Producers: Martha Hewett, Kim Nguyen
Editor: Pete Ansell
Click here to follow your favourite Truly shows on Instagram!
Truly - / trulyshow
Born Different - / borndifferentshow
Shake My Beauty - / shakemybeauty
Hooked On The Look - / hookedonthelookshow
Beastly - / beastlyshow
Ridiculous Rides - / ridiculousridesshow
Dog Dynasty - / dogdynastyshow
For more amazing content, click here!
Beastly: / @beastlychannel
Barcroft Cars: / barcroftcars
She has kept him infection free for 10 years!! That is incredible!! That’s a good mama right there.
She is. 😊.
Mama go that💕🙌🏿
Baby Goose, marky is a angel like you
That's the first thing I thought when she said it....just wow! That's hard work, love, dedication, and more love. 😊
My thoughts exactly
I just love how he said thank you daddy, and how he plays with his dog, how he appreciates his mom for all she does, and how he is family oriented. I pray he sees many many birthdays
Hii
He passed away … about a week ago
This broke my heart but he did live to 21 and I know his mama took such good care of him and they enjoyed life. I’ve been watching his videos.. sob every time
So sad to hear that, he was a gentle soul! RIHeaven sweet baby
Marky is truly a warrior!! I adore him and his family! Praying we get a cure for EB so the suffering ends!
Why suffer every day ??? well, I understand enjoying life, but it's worth it? A minute of joy and all day of pain ??? It's a painful death, euthanasia is the best choice.
The misery ends.
This is so sad I agree with you marky got this
Max Plank do you feel better about yourself now? Evaluate yourself because what you just said is sick. I’m praying you send positivity and kindness into the world instead of this disgusting rhetoric. Imagine if him or his family saw this. You are sick sir. Get help.
Sienna White hi I’m Markys mom and I just read his message and it’s absolutely devastating to read it
Markytherock Jaquez I’m so sorry you had to see this. I’ve been following you and your family for awhile. Marky is a true inspiration and light in this world as well as BaBa. God gives his toughest battles to his strongest warriors. Sending you lots of love and light!!!
I was very sad to find out Marky passed away this past year. What a beautiful inspiration on so many levels: his strenth, his faith, his kindness, his perseverance, his selflessness....just to name a few. His Mother is a beautiful gem, so devoted & loving. I know you are living pain free with your best friend and brother,Carlos, in Paradise❤🙏Thank you for being the difference in the world. My heartfelt condolences to your family and furry siblings.There is no doubt you are missed fiercely, yet your light still shines so brightly!
I hope that heaven exists so Marky can be pain free and experience what it’s like.
Seriously I was brokenhearted myself. I broke down and cried. He’s not suffering no more he’s at home now.❤️🙏
I'm glad he's not suffering anymore. Nobody should have to deal with such a horrifying disease
Anioł wrócił do swojego Nieba ...
@@EdWard-ie5wnexactement et désolée de dire cela ,mais c’est une délivrance pour sa famille qui ne vivait que pour lui .personne ne devrait vivre cela toute sa vie ,ni lui ,ni eux . On oublie trop souvent la souffrance d’être aidant
a friend of mine's child has this. It's amazing how strong these kids are.
Most kids aren't given a gun at that age. So strength is one thing they have to gain. I doubt this disease is going to let you have anything but strength.
My cousin baby had this disease it was so painful to see him suffer. He passed away a few months before his first birthday. It’s sad he passed but he’s in a better place no more pain.
hes amazing i love you guys marky is so brave
Yes 🙌
He was such a trooper, truly incredible boy. Him and his mama.
I am proud of him, because he is strong and brave!
How could you not be?🤷🏼♀️
I wish I was his brother I will tell him ur strong u can do it
Why suffer every day ??? well, I understand enjoying life, but it's worth it? A minute of joy and all day of pain ??? It's a painful death, euthanasia is the best choice.
The misery ends.
@@maxplank2769 I think that's something that's up to the individual suffering the pain. I also think assisted suicide is a treatment we should all have the right to choose, here in America. As a nurse, I've had several patients who would have made that decision, and it would have given them control over their life and death, allowing them to die with dignity. So many just hung on for weeks, suffering pain I couldn't even begin to imagine.
@@IAmSuzyQ I totally agree with this. I think it's pretty obvious this boy wants to live, but I do feel assisted suicide should be a legal choice for those who don't, or feel they just can't anymore. Our bodies are ours, and we should have full autonomy over them.
@@boogiemonstermom677 Yes, absolutely! I've always found it to be odd that anyone would have the right to force another human to keep living, against their will. I think it's important for the person considering suicide, to first receive therapy, and to try medication before being granted assisted suicide, because through those interventions they might find happiness and the will to go on, but of not, let them go. How dare we force someone to live a life of misery, while we just make that decision for them, then just walk away. It's cruel. And when it comes to cancer and other fatal conditions, the decision to die with dignity should be given to that person. No one should have to suffer a slow and painful death.
There ain't nothing like a mother's and father's love!! I'm in tears!
I think it's important for parents to do a genetic test if it just in case they carry any diseases that can be passed on to their kids. It's one thing one parent carries it, but it's way worse when both have it, the kid gets the worst of it.
Genetic testing is, unfortunately, still extremely expensive and as such, isn't affordable for most people. One alternative is to look deep into family history to check for such conditions (one way is to make a "medical family tree"), but medical records weren't as common or thorough just a few decades ago as they are now, so it's not always easy, particularly if the fetus never made it to term or the child died before school age and if you don't know all of your family members, that might be made more difficult, but in many cases, it is doable.
So if two people love one and other and they share a gene that could possibly cause a disease in a child they conceive the parents should not be allowed to have a child like Marky?
I too wish this was possible. But as its been mentioned it’s still too expensive to do genetic testing especially here in the US where you practically need a referral just to sneeze 🤧 🙄. I know firsthand cuz my daughter was born with albinism. No one on both sides had in any memory knowing of this happening. You see both parents must carry the recessive gene and then there’s a 25% chance of each birth having albinism. We were offered genetic testing AFTER she was born, cuz there was warrant for it then. But sadly not before\. Don’t get me wrong my kid is amazing! Honors and early college despite being legally blind (has limited vision).
@@numbers1812 yes. why bring suffering for your personal gain. this child is nothing but something to look at and for us to feel better about our lives, something for us to throw money at uselessly, and something to take resources...all the while he suffers in horrible disfigurment and pain. robbed of fulfillment. its absolutely horrific. may his soul rest
@@nikkids4266 well they already had one child with it so they were offered genetic testing, got it, found out they both had the gene, and chose to bring another child in this world to suffer. Very selfish.
You were indeed strong and brave! RIP marky! I'm very proud of you
He died?!?!?!?!?!?!
@@aydenjoy4239in 2021
You’re an inspiration to everyone that is lucky enough to watch this. You ARE strong and brave! Keep on keeping on Marky and family ❤️
I’m so sad 😞
Agreed!
, no kn on in k
My god when you think ur life is really really hard just think of this strong lil kid man stay strong kid your a brave boy!!
He’s 20. He appears much younger though
I can't imagine the pain he has to live with...I have health issues, ie...Cancer, Sjogrens Syndrome, etc...deal with pain 24/7, but nothing like Marky! He's an amazing young man! BE SAFE,GOD BLESS!🇺🇸🙏❤
God bless you too!
May God bless you too Dave!
May ALLAH bless you and heal and cure you completely Ameen stay strong and never loose hope things will get better with time We all will pray for you may you get fully healed Ameen stay blessed stay safe Takecare of your self jazakallah
God bless you
Prayers for Marky and his family. Thank you for sharing . Praying for you too Dave! I know about cancer and pain ... joy in life in the midst of pain is truly a blessing from God. Hope you have joy always.
I’m so sorry you lost both of your children. May they both rest in peace.
Poor kid but he’s happier than most people
Is he though?
Hii
Croix Murphy yes he is this is my son
@@MarkytherockJaquez don't stand up there and say he is happy. He himself says what incredible pain he is in. How can he be happy living a life of total pain and discomfort? Let's be realistic. Nobody deserves to live this way.
@@GroundhogBaby yeah you're right nobody deserve to live like this, but life ain't fair and that little boy is living his best life, he enjoy as much as he can even with the constant pain
So happy he has those two doggies to make his days brighter 😊
Butterfly skin and heart of a lion.God bless him and his family.
He is so unbelievable! I am with my son in the hospital for over a month now. He has heart diease. Watching your story gives me strength. If you guys can make it work, so can we. Thank you for the inspiration❤
I hope your son is doing okay 2 years on
Oraremos por tu hijo para que Dios lo sabe ❤
I follow him on Instagram. Even with such a terrible illness he still smiles and has so many celebrity friends. Even in his state he’s affected a so many people with positivity and just somehow oozes confidence. People should learn from him!
This is the most horrific and unfair disease. The fact that it leaves these children in almost unbearable pain during their waking hours is something my brain cannot process. They are the sweetest and most loving kids. 😢
God I wish I could take his pain BLESS him Lord
Not sure he can handle any more blessing from his Lord. One incurable pain filled blessing is enough.
the lord gave and took his brother's pain already
Areyousaying idontknowmyname As someone that’s agnostic, I find your comment quite disgusting and the reason why atheists are looked down upon. One could argue that the lord placed this burden upon this young man because of his incredible strength, I don’t know a single person that could deal with half the pain this young man handles and still be a compassionate person. This young man is a gift to our society for spreading awareness about a serious condition and displaying strength that exemplifies the utter greatness of the human spirit. Someone asking for blessings for another person is an expression of love and compassion for their fellow man, and to mock that is quite frankly pathetic.
@@BumpyHumpyDumpy Excuse me. I am Agnostic also. Considering my reply was accurate then i am not sure what your problem is. They can't have it both ways.
@@Areyousayingidontknowmyname If you were agnostic then you wouldn't have said something so heinously ignorant. Your initial comment reeks of narcissistic self-importance that is deeply rooted in atheism, and it's clearly identifiable in this response. I wouldn't be surprised if you learned the word Agnostic from researching my first response to you. You haven't a clue about the concept of faith, which is exemplified in your latter comment. Can't have it both ways? Have you ever done any research at all into the association between suffering and theological beliefs, particularly those of the Abrahamic religions?? Clearly not.
Take your short-sighted, ignorant, and down-right offensive self somewhere else. You're completely frivolous, and it's truly pathetic that your jealous of this young man provoked such an ugly expression against someone's faith.
Woah this guy is probably the most mentally and physically strongest man to ever man. Great to hear that he has a good support group.
I am praying for you Brother. You're tough young Man. I salute you 💪.
Marky passed not that long ago. He was an incredible person & lived his life with love & grace. The world is a lot poorer without his magnificent spirit. However, glad he’s now free of pain. RIP, Marky! 💕
So nice cute boy
19...Adult
I was crying just in his wakeup scene. Omg poor guy he's beautiful and I feel so bad he's hurting! Life is so fragile. I'm so glad and proud that you have such a good attitude Marky💜 sending love
If you think pit bulls are vicious... watch this. This makes me smile.
Yes all depends on owner anybody can be taught to be vicious no matter what
Well it depends how they are raised.
Well clearly these beloved dogs have been raised well, and in return protect, love their friend.
I was thinking the same thing
i went to my neighbors house they had 2 and their pit bull's did not bark at me once even tho i just met em
He’s a wonderfully brave and strong young man. This is a terrific beautiful mom. And the dad is amazing too. He stayed and supported his family in face of challenges.
Sadly he passed away December 2021
Nothing but the utmost respect for him and his mom. Amazing people. What a triumph of the human spirit.
Marky...You have the most wonderful family Ive ever seen. Bless you and family. Stay strong buddy🤗
Rest In Peace Marky ❤️ I came here to rewatch some videos of you to remember you. You were such a beautiful beautiful soul. The world will miss you
U can see the pain in the mom and big Bro's eys 😔
So sad God help them
Please don't take this the wrong way but if you have one child with this horrendous disease. Why would you try for more? I would be frightened to try for more children.
Because God said be fruitful and multiply
@@Jama00209Oh, well, if GOD said so 😂
@@Jama00209bruh, god aint real. Stop. If god wants you to have children knowing you are giving them a horrible disease, your god sucks my dude. Sorry to tell you.
Because accidents happen, maybe your parents should have explained that to you more when you were born.
I hope they give him the strongest and safest pain meds there is.. what a brave guy.....
Love the dogs, they teach go beyond the looks, inside is what matters..they're loyal and loving unconditionally to fullest degree. They just know. He's a happy person.
R.I.P. MARKY Prayers for his family and friends and everyone who knew him. You are definitely missed each and every day. No more suffering. I can't wait until we meet someday. Thank you for your short time on earth as you definitely inspired alot of people.
Oooh that poor boy! He seems so sweet, but also incredibly strong. I can't even imagine being in constant pain my entire life!! Broke my heart to see that. 😢😭 His mom seems like an amazing woman too. ❤
He is an amazing person and his dogs are so cute. I just love this channel.
How can someone be so strong? It must be a blessing he is spreading love and strength… love you darling 😊❤
He's a warrior
💚Such an inspiring young man & Mom!!!
Really kind and humble parent 😭🤗
Or selfish? They had a child with the same condition and that child died, they knew the risks of having an other kid, and decided to do so anyway, and all they did was bring in a life of pure pain and suffering.
There are so many children that need adopting, and these people decided it would be better to have an other kid with their broken genetics instead of make an other childs life better
So not only did they NOT help a child by adopting them, but they damned their own child to a life of suffering just because they wanted children related to them
Selfish, selfish people.
That man (he's 20, so he's a man now) deserves better parents than ones who basically chose this life for him.
TheRubinator13 i would normally agree with this but they were only 13 months apart. and the first son didn’t die BEFORE the other son was born. in general i do usually frown upon people having children when they KNOW they have such a high chance of them having complications.
@@oliviarichman6035 this condition is known at birth, she knew she carried the genes for this and still had another child
When I say I'm here crying because he is so amazing and he has a wonderful heart with a big smile! He just made my heart burst with his happiness for his big brother and his love for his family
He still go in life, This man is so amazing 😍😇
Wow. The whole family is strong. Hit me even harder knowing he had a brother that passed away from it. Marky is very strong 👏🏾💕❤️
Aww he’s so strong n bravee I love him 😍
They knew it happened with the first kid and went and had another one 🤦♀️
And I bet if asked they would do it all over again! It's called LOVE!
@@rm4861 I wouldn't wanna bring another kid with that condition into this world knowing that he would be suffering from pain and living like this for the rest of his life. One is enough. And that's called LOVE .
@@rm4861 It's called being selfish.
She was told she wouldn't have another baby with it, she didn't know.
Wow so rude
i almost cried when he talked about how the dogs love him
Why would they have a second child, knowing that disease would once again be passed on. Its cruel.
God bless you Marky-such an inspiration to deal with such pain and daily challenges. Your parents are beautiful souls as well. Watching your video turned my day & attitude around. Thank you for sharing your story. ❤️
We miss you, buddy. We miss you so much. We’ll never forget you and how strong and brave and fearless and resilient you were
What a beautiful, brave soul. Same to the fam.
Nice pic
Marky is a hero and such inspiration. I have severe pain and dealing with it in a positive attitude can be so difficult, seeing Marky and his joy. Hearing his laughter, and absorbing his thoughtful words remind me daily that I can do this and to focus on the positive, just like Marky.
It’s amazing that people can still show that miracles do really exist
That ain't no miracle. That is a life of torture.
@@GroundhogBaby I was wondering what the miracle was also.
You got that right
Angel Fitzwilliams shame on you
@@MarkytherockJaquez what for? It's true.
RIP buddy. 🕊️
You are Strong and Amazing! God bless you and your family!❤
The happiness and positivity that Marky and his family radiates is so inspiring. Such amazing individuals ❤️
Truly amazing!, he’s the strongest guy I ever saw, and his family, specially his mom is the real Wonder Woman! My deepest respect
"Thank you daddy".... ugh I wish I could take his pain for one day...he has a special heart and I hope they find a cure one day
Marky was not the first case of "the butterfly disease" before him it was Johnny Kennedy from England I believe. When life gets them down they get back up and they still enjoy life as it is. I could never imagine being in the most intense of pain every day I get up I would feel the need just to be down. This young man is probably the strongest I've seen. Rest in peace marky you were so loved and still is in spirit ❤️
Stay strong brother 🥺
didnt he just pass away too ?? both him and Adalia are now gone may they R.I.P. ALWAYS
He is With god right now With babbas brother😪
What a precious boy ❤️ but if the parents knew they both carry the gene , why have 2 children knowing they will go through such suffering ?
RIP Angel
You'll always be an example of GODS GRACE ! . . All of you ! . . 🌹 . . ✝️
Literally 😭😭😭😭 when he told his daddy thank you. 😭😭 so brave!! God bless him 🙏🏾
he is 19 years old not a little boy
@@jessicaschoonmaker2073 yeah its kinda disrespectful to call a grown man "little boy"
I loved that part too. Marky is amazing.
@@jessicaschoonmaker2073 i said what i said. Write your own comment get off mines.
Am doing my A&P class i ended up here sad Marky is RIP he was brave atleast there no more pain for him
He is so pure ❤️ His Family is so sweet I wonder what the older brothers Instagram is and if he single. 🥰
is preimplantation genetic testing not available? the fact she had previous children with the same disease and they died - it's a bit risky to continue having regular pregnancies when both parents carry the mutation.
Wow! Such fighter for life. My respects.
God bless you marky. Rip.😭😪❤👼
THANK YOU FOR SHARING THIS BEAUTIFUL STORY JOURNEY OF YOUR BEAUTIFUL BABY BOY ❤️🌹💯💜
What an inspiration! Anyone who has known his story will not forget what true courage looks like.
His mother, too gives a remarkable example for us to follow. Love truly carries us through tough situations.
God Bless.
She's kind of mother I want to be to my unborn son, she's a really good mum
Poor. Brother he did nothing to deserve this 😢hurts just to see …. Rest in peace.😢
Be with the angels Marky .
Rest In Piece Marky You we’re so strong now you live your life with Jesus 🙏🏻🕊️
Marky is now living forever with Jesus in a beautiful, joyous, glorified body.
Marky’s courage and faith gives me strength in my physical struggles. Thank you for sharing his story. 🙏🏼💕
GOD bless you my brother
I'm so very sorry for your precious loss, my daughter was born with EB and it was so hard to watch her go through so much😢 I lost her at the age of 16....my deepest condolences to you and your family❤ prayers for strength🙏
Hiiiiiii
He passed away … about a week ago
Amazing family! Marky, you're so strong and brave! You're an inspiration to many people. 💜
Marky is remarkable!! I pray there’s a cure for this horrible disease...
As a nursing aide, there is so much that goes into care with patients like this.
These parents from the time they get up to closing their eyes at night, they’re thinking about Marky and keeping him safe and healthy.
I wish they'd talk about how they control his pain. Right now in America there is a war against chronic pain patients, ALL cpps, to reduce their medications even when their doctors think it's wrong and harmful and doctors that go against the government to help their patients are being arrested on trumped up charges. I know this is a little off topic but normal people need to know that overdoses are very infrequent with legally prescribed medicine and most addicts die because of heroin or fentanyl.
He is an inspiration, I can only imagine his strength and courage!
YOU, are so right
I cried through this whole thing. My heart goes out to this young man.
Marky to you and Babbas: You are amazing kids, young men. You are beautiful. You are brave. You are amazing. May God bless you and your family. ; )
You are strong and brave❤️❤️❤️ God Bless you🙏🏾
I absolutely love Marky I follow him and his mother on IG
Such a strong beautiful family with their awesome American Bullies too
So happy to see he’s still striving and living his life to the fullest ❤️❤️💯
RIP brother❤️ Hope you are out there in better place with peace.
He's incredibly strong, I admire him so much!!
He is very strong and brave.
Everyone don’t think of EB as a tremendous burden but in some ways a gift. Sure it must hurt like hell but the people who have this are some of the bravest and kindest people I have ever come across and have been told by others to me. Yes I have it to and I’m not talking from just experience but for those I have met and watched videos about.
Your my inspiration ! I’m so proud of you. Your spirit is uplifting, even when you say your in pain you still find some way to smile. GOD BLESS YOU AND YOUR ENTIRE FAMILY🙏🏽💖
God has a very, very important missions and place for this angel I know ❤❤❤❤❤❤🙏🙏🙏🙏🙏
He must be an old soul who is on a high frequency.
Johnny Kennedy had this disease and he was that way too, he died at age 36.
He is his own soul and not an old soul. GOD has givdn him his own wise soul. ❤❤❤❤❤❤❤🙋🏾♀️🙅🏽♀️🤝🏾
Какие страдания!
До слез жалко!
It still gives miricales... thx strong man to show the intired world how it cut be god bless you greetings from germany