Mother of Son with Rare Skin Condition Speaks Out after Being Banned from TikTok

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  • Опубликовано: 20 ноя 2024

Комментарии • 212

  • @RavenHeartTarot
    @RavenHeartTarot 3 года назад +90

    The EB community stands with Melissa and Marky. EB needs more exposure and that is what Melissa was doing.

  • @zxdrty
    @zxdrty Год назад +60

    He was such a remarkable human being. RIP MARKY🙏

  • @terintiaflavius3349
    @terintiaflavius3349 Год назад +31

    Rest in peace Marky. I hope your family finds peace and solace in the number of hearts marky touched

  • @Henry-qy7eg
    @Henry-qy7eg Год назад +76

    Speaking out to educate all of us about a rare disease. Instead of wallowing in self pity, she had found the strength to educate us in not judge others by their appearance. Marky had a mother who fought day in night for him like all mothers do for her children. Strength courage and unconditional love is something we really need. Thank you!

    • @jackie5522
      @jackie5522 Год назад +10

      Marky and his Mother are amazing.

    • @billzjr222
      @billzjr222 Год назад +2

      Damn bruh u got me in tears man.

  • @NikB331
    @NikB331 Год назад +63

    God Bless this family.. This is a brutal disease ..My son had severe dermatitis..So severe he also got strep on his skin and went septic. It looked like he was burned in a fire..He was 4 and he still remembers these days. He didn't get any relief until few yrs ago with some advancement in medications. This was years ago but sending my thoughts n prayers to this family...We need to bring more awareness to diseases like this...

    • @scottandrewhorne4655
      @scottandrewhorne4655 Год назад +3

      God Bless You Amen xxxxxxx And God Bless Your Earthly Life Time And Earthly Family Amen xxxxxxx

    • @lucyterrier7905
      @lucyterrier7905 Год назад

      It's Lyme disease. Take him to a doctor that knows how to test for it, read the labs properly & can treat it. Most doctors don't know how.

  • @patriciawhite9654
    @patriciawhite9654 2 года назад +133

    Sad he’s lost his fight. Such a beautiful soul that showed so much positive vibes through all the hardships

    • @hartzaire
      @hartzaire 2 года назад +4

      🙏🏾🙏🏾🙏🏾🙏🏾

    • @Ольгакулягина-ы7б
      @Ольгакулягина-ы7б Год назад +6

      Марки не проиграл, он был очень сильный, какую боль терпел каждую секунду. Он многому нас здоровых научил, ценить близких, жизнь.

    • @saraschneider6781
      @saraschneider6781 Год назад +7

      We've just lost a 17 year old in our area with this disease.

    • @nicoleserenalauer3027
      @nicoleserenalauer3027 Год назад +10

      See it from a higher position! This lovely soul is free now, all that pain is gone! He suffered extremely..... more than we can imagine.... ❤

    • @scottandrewhorne4655
      @scottandrewhorne4655 Год назад +8

      Marky Is Having A Fantastic Time Back Home In Heaven Amen xxxxxxx Where Carlos Is Dragging Marky Every Where Saying Come See This Come See That Come Meet This One Come Meet That One. Marky Is Fine Trust Me xxxxxxx

  • @Nan-59
    @Nan-59 Год назад +33

    Marky one brave guy. I can’t imagine the pain he went through.
    I’m so happy I knew him. He reached so many people with his love & kindness. He certainly has a brave mom.
    ❤❤❤❤ Rest in Peace Marky

    • @martijordak806
      @martijordak806 Год назад

      God sent him on a mission. Mission accomplished. So brave! So humble! So accepting of his demeanor! God's angel now! God Bless his mother..she never failed him and loved him unconditionally! She was on a mission from God also.❤❤

    • @elleg3651
      @elleg3651 Год назад

      ​@@martijordak806I could never believe in a God that would allow someone to suffer so much for absolutely no reason at all.

  • @sharonlainey6416
    @sharonlainey6416 2 года назад +82

    Rest in peace Marky. You are God's angel now 🙏 ❤

  • @jessi2458
    @jessi2458 3 года назад +84

    How awesome that you featured Marky and Melissa on your show!! It is extremely important to share and normalize experiences like theirs. The courage and strength that it takes for people like Marky is beyond inspiring! Marky story is one of the most incredible I've ever witnessed. We love Marky the Rock and his amazing Mama!!

    • @MarkytherockJaquez
      @MarkytherockJaquez 3 года назад +7

      ❤️❤️❤️

    • @C2G2
      @C2G2 3 года назад +7

      Agreed 💯❤️👍🏿💯

    • @WhiteDoveSam
      @WhiteDoveSam Год назад +8

      ​@@MarkytherockJaquez
      Thank you for sharing Marky with the world. ❤️
      He was *SO* *STRONG* , *POSITIVE* & *BRAVE* ! I do believe that countless people who've seen his videos have been inspired by him as well as found motivation to persevere through their own challenges in life.

  • @C2G2
    @C2G2 3 года назад +47

    And this is why I don’t even have Tik Tok they are full of crap my heart ❤️ goes out to this mother and her son and I am glad that you are raising awareness about your son’s skin condition and I’m extremely sorry that your son has epidermolysis bullosa and that you had to go through such evilness with Tik Tok 💯. 🙏🏿

  • @PrincessSilvia
    @PrincessSilvia 3 года назад +72

    Thank you for sharing! My son suffers from the same exact condition. It's brutal...

    • @juneyshu6197
      @juneyshu6197 2 года назад +16

      Blessings to you and yours.

  • @jhatcher9156
    @jhatcher9156 Год назад +38

    Hoping Marky & his brother are rejoicing in paradise! These boys are angels who will watch over & take care of those they loved now that they have no limitations. Never forget whilen on your next journey that you've made your mark here & now it's time for you to live the lives you were meant for! Your stories will continue to inspire forever ❤
    Endlessly grateful for your message of strength.

  • @TallulahBelle3276
    @TallulahBelle3276 Год назад +10

    I saw this beautiful Mom on a video talking about viewers giving her a hard time. Criticizing her for her trying to bring awareness n sharing their experiences. In my mind I’m thinking, WTF?! What is wrong with people?
    Admiration, reverence and respect for the entire family. ✨💝🙏🏽🌎🙏🏽💝✨
    The world should feel nothing but appreciation, love and compassion for Marky and his family.
    I send my love and prayers to them all. 💝🙏🏽💝

  • @tonyandbevjordan7363
    @tonyandbevjordan7363 Год назад +8

    He had such a beautiful smile. God bless you all. Bev

  • @burly636
    @burly636 Год назад +13

    His faith was outstanding!!!!

  • @Amandabrown83
    @Amandabrown83 Год назад +5

    Rest in peace, beautiful boy.

  • @fredchinka8068
    @fredchinka8068 2 года назад +29

    Une honte, c est justement grace à eux que j ai entendu parler cette maladie horrible, puis marky nous a montré une humanité inimaginable, même dans la douleur il a toujours été souriant, humble et son rire, quand il est décédé je l ai vécu comme un proche, il me manque

  • @tammypundt9773
    @tammypundt9773 Год назад +9

    Ive watched these videos so so sad awful disease and he was always smiling even how bad he was hurting very very brave boy

  • @rebeccarawlinson5858
    @rebeccarawlinson5858 Год назад +7

    ❤ I stand with u I'm part off EB community my little butterfly 🦋 was born and past in 2007 god be with u xxx

  • @MrNypdblue911
    @MrNypdblue911 Год назад +18

    In memory of the late Jonny Kennedy... I first became aware of this heartbreaking condition back in 2004 in the UK, a Channel 4 documentary 'The Boy Whose Skin Fell Off' on the channel web site and later 'RUclips' covering a young man whom had such an effect on my outlook of life, I would encourage people to take a look back 20 years and you'll witness one incredible young man, not wanting to be defined by this cruel illness. God Bless Jonny and his family, not a day goes by I don't think of him..

  • @AprilMartinChartrandMS
    @AprilMartinChartrandMS 3 года назад +45

    This has to be brutal and a physically painful H*LL on so many levels. I just can't even imagine the level of excessive pain these kids are in. Oh gosh.

    • @C2G2
      @C2G2 3 года назад +8

      Agreed 😐😔😑

    • @davidgray1515
      @davidgray1515 Год назад +4

      Or why the parents willingly and knowingly passed it to 2 children and watched them suffer and die in pain every day.

    • @milanas.4666
      @milanas.4666 Год назад +2

      @@davidgray1515 das ist ja unfassbar!

    • @alice68209
      @alice68209 3 месяца назад

      @@davidgray1515agree when one has it why the hell have another one???? I will never understand, it’s very cruel

  • @patriciaschuster1371
    @patriciaschuster1371 Год назад +6

    RUclips has wonderful coverage of another young man with the same condition, God rest his soul.

  • @hannahcrumley3103
    @hannahcrumley3103 3 года назад +22

    I watch this sweet family on Instagram. They are an amazing family! Such inspiring people!

  • @jeanalzaidi908
    @jeanalzaidi908 3 года назад +16

    marky is a amazing young man he goes through so much pain especially bandage changes he's so brave,hes recently undergone stem cell transplant & hes actually showing some improvements
    his momm& big brother are amazing he's got 3 dogs too theirhissupport animals

  • @jennifercrosby3789
    @jennifercrosby3789 Год назад +9

    Miss you very much marky. You are never forgotten ❤❤❤❤❤❤❤

  • @debrabradley7227
    @debrabradley7227 Год назад +8

    None of us know what anyone is going through ❤❤❤ be kind xx😊

  • @HappyHermitt
    @HappyHermitt Год назад +3

    Too msny people ate obsessed with skin color. Marky touched everyone and inspired thousands.
    This little man 8s the bravedt person Ive ever seen. To see him smile knowing how he suffrred is inspiring and hesrt breaking at the same time.
    He's not a butterfly. Hes an Angel.

  • @sandyoi5301
    @sandyoi5301 Год назад +4

    Sweet 😇 Marky...
    You have taught us so much more than you know...
    Resilience, Courage, Determination, Bravery, and Positive Loving Guidance!!!
    Thank You, Cherished Marky...
    Be At Loving Peace 🕊 with God's Loving Oneness!!!
    🙏 💖🕊 ✨ 🕊 💖 🙏

  • @angeleyes7531
    @angeleyes7531 3 года назад +20

    God bless this beautiful child 🙏

  • @stephenholmes5362
    @stephenholmes5362 Год назад +3

    Such a great mom, she & her son Marky are way too good for TicToc!! Sorry Marky has left us but he is with the angels and smiling down on all the good people here on earth!!

  • @rickeynewton2909
    @rickeynewton2909 2 года назад +15

    RIP🙏🏾 he passed recently

  • @sandylink4501
    @sandylink4501 Год назад +3

    Love your son marky. Thank you for sharing his story and yours. Marley has stolen my heart and will be greatly missed.

  • @olivedog1880
    @olivedog1880 Год назад +10

    KING DAVID! That’s Markys baby. Melissa is the mother we all want. She’s just amazing. As is Marky, he lives on through King David

    • @davidgray1515
      @davidgray1515 Год назад

      No way would I want Miss Celebrity to be related to me in any way.

  • @endtimeawakening5557
    @endtimeawakening5557 Год назад +25

    This young man is a POWERFUL inspiration to all that suffer in these physical bodies. He's mature beyond his years, and has a heart of solid gold. I pray for a miraculous cure for this precious soul! Father bless him and his wonderful family!!!

  • @terrieharrington7390
    @terrieharrington7390 Год назад +1

    So sad that Marky had to suffer so much I hope he is painfree and happy in Heaven

  • @gemqueentarot6534
    @gemqueentarot6534 3 года назад +11

    My son has Epidermolysis Bullosa Simplex … these are strong children.

    • @mpat100
      @mpat100 Год назад +4

      blessings for him and you

    • @davidgray1515
      @davidgray1515 Год назад

      These are children who suffer greatly. I would not choose to live that way.

  • @susiemendenhall4783
    @susiemendenhall4783 Год назад +2

    They banned her videos and didn't ban some of these videos I have come across. Bless your heart❤ RIP.

  • @isabellrc
    @isabellrc Год назад +13

    His Mother was his greatest ally. A wonderful human being!

  • @sunnyfarrill7665
    @sunnyfarrill7665 3 года назад +22

    This young man and his family are so inspirational! The heart and love they demonstrate every time is a reason for faith and the belief in courage and strength.

  • @nancyaponte2936
    @nancyaponte2936 8 месяцев назад +1

    I'll never forget you marky

  • @shannonfergusson978
    @shannonfergusson978 Год назад +1

    From watching their videos I've learned so much. He's a beautiful, kind soul.

  • @RoyalMasterpiece
    @RoyalMasterpiece 2 года назад +29

    This is pure discrimination. I wonder if Tik Tok violated the ADA. She needs to sue.

    • @brandondixon2138
      @brandondixon2138 Год назад +8

      The ADA only applies to American companies, and TikTok is Chinese.

    • @machelleblanchard1988
      @machelleblanchard1988 Год назад

      Of course the black women narrating turned this story into a Racial Story, WHY? GET OVER YOURSELVES!

  • @DAVIDBROWN-bj1yc
    @DAVIDBROWN-bj1yc Год назад +3

    What a strong young man, god bless you on your ext journey full of angels like yourself😇😇😇😇😇😇😇

  • @monicavillarreal3902
    @monicavillarreal3902 Год назад +4

    Well it definitely was heartbreaking to watch. So, I kind of understand why tiktok would put a warning. I too couldn't watch because I felt like he was suffering so much and it hit me to the core.

  • @madamelebuff
    @madamelebuff Год назад +3

    Just heartbreaking

  • @birgit4314
    @birgit4314 Год назад +4

    Ruhe in Frieden 🙏.
    Marky war ein unglaublicher Junge.
    Tapfer,mutig und liebenswert ❤!

  • @getamazed5315
    @getamazed5315 Год назад +4

    Une super maman pour un super petit ange 👍👍👍♥️♥️♥️🙏🕯️♥️🌹

  • @5801160052086
    @5801160052086 Год назад +3

    S mothers love for and dedication to her son is remarkable ❤❤❤

  • @joywyke8592
    @joywyke8592 Год назад +6

    He will never be forgotten. Rest in Jesus arms until you are reunited with your family.😢

  • @stacyfabiszewski4633
    @stacyfabiszewski4633 Год назад +2

    God Bless Marky, RIP, Marky , you were so strong and positive ❤❤ sending love and Big Huge Hugs to his family, God Bless his family

  • @carolmirelez170
    @carolmirelez170 Год назад +1

    God bless you! You and your husband are amazing! Micky is now a beautiful ANGEL! ❤️❤️❤️

  • @goatygal
    @goatygal Год назад +4

    I’m not on tik Tok. Screw that stupid app.

  • @meghanvail1713
    @meghanvail1713 Год назад

    THANK YOU FOR SHARING HIS STORY.
    Rest in Peace Marky. I have tons of health issues myself. I have a caregiver coming in...... Stay Strong...

  • @jennsnook145
    @jennsnook145 10 месяцев назад +1

    I don't think there is anything wrong with wanting to share your story and get support in any way you can..

  • @joanflannery3839
    @joanflannery3839 Год назад +17

    Rest in peace Marky great guy❤❤❤

  • @sandramaggard2962
    @sandramaggard2962 Год назад +1

    Love,comfort and peace beyond understanding to this beautiful family! How anyone could complain while Marky suffered with a smile and so much love to give and around him. He knew he was loved dearly and he loved dearly too. May God open people's eyes to the love this family shared.We were so blessed to experience the love in this beautiful family. Don't judge nobody knows what tomorrow might bring but I pray the love this family has shown will open hearts! How could it not? True love is so beautiful and wonderful like this family. Fly high little Marky your with your brother and the angels are rejoicing around you both! RIP BROTHERS! JESUS IS CARRYING YOU NOW!

  • @JuicyBabii
    @JuicyBabii Год назад +1

    I loved watching & learning from Marky! I also wonder if it’s hereditary and if so, why continue to have children knowing that this is something they may have to suffer from? Also, I’m a fire survivor. When posting my burns, Facebook put a disclaimer on my photos as well. I wasn’t offended because some people do have extremely sensitive stomachs, my mother being one of them. She couldn’t change my bandages, my dad had to. She would literally get sick. I can’t blame someone for that.

  • @charley1359
    @charley1359 3 года назад +7

    Prayers 🙏🏼

  • @bettinalocklear
    @bettinalocklear Год назад +3

    God bless this family , The are going through a lot his a happy child he love people like he do pray for the family.🥰🥰🥰🥰

  • @berthabegley9950
    @berthabegley9950 Год назад

    The first time I saw Marky I totally fell in love with him. He is a huge inspiration too anyone who will listen. I’m older and have a lot of health problems. When I saw him I was ashamed of myself for worrying over my situation. My husband passed away 4 years ago it’s been hard. If you don’t get happy when you see him there’s something wrong with you. God bless you mom and family. I know Marky has passed so he is healed. ❤️🙏😇

  • @piperbentley6032
    @piperbentley6032 4 месяца назад

    No!!!Your story matters so much❤❤❤
    Bless you
    I'll pray for you and yours
    Strength and courage much love

  • @traebee333
    @traebee333 Год назад +5

    This mother has been through so so so so much, and was also accused of burning her sons by her cruel ass neighbors. She deserves all the best in life.

  • @dawnbarker-layne4470
    @dawnbarker-layne4470 Год назад +1

    Brave son and his brave mommy.❤❤❤😢😢😢. Be strong, dear mom. God is comforting you now. He doesn't put any more on a man than he is able to bare. Let God make you smile again. Rest in peace little son your pain is forever over.😢😢😢😢

  • @junekendall-yq1jx
    @junekendall-yq1jx Год назад +1

    No what she goes through my grandson born with disease too

  • @jennyl.5730
    @jennyl.5730 Год назад +1

    Everyone loves Marky!! RIP sweet boy. ♥️

  • @warialdasue
    @warialdasue Год назад +2

    Such a hideous desease. The first time I saw it was on RUclips about John Hudson, and I cried for hours. If I could afford it I would give so much for research to find a cure for EB. Lots of love and blessings to these young people

  • @mariakucinich9427
    @mariakucinich9427 8 месяцев назад

    I have followed Marky for a while before he lost his fight, he was such a courageous young man and to ban his mother for trying to educate people about this horrible disease is unforgivable. The way he said Momma was so sweet, R.I.P Marky

  • @zonadaniell4584
    @zonadaniell4584 Год назад

    Kudos also to Marky's family for the love and support given him throughout his life and instilling such a positive attitude in spite of knowing the ramifications of this dreadful disease. You all were his rock and will continue to be as he awaits your reunion again one day. You have two sons who were taken too soon, but we know God had a reason to call them home. God bless you all and may you find comfort in knowing how these two young men were such stellar examples for young men everywhere. Prayers to all.

  • @kellyt.florko5312
    @kellyt.florko5312 Год назад

    He was a wonderful young man he was kind and loving he cared about others such a thoughtful young man I thank you for sharing Markie with the world your videos have really brought so much awareness about the horrible disease but more than that it's shown that even with all his pain and his troubles and hurt in the heartache that he suffered he still remained a happy kind and caring young man and this is because he has a wonderful family and it is so good of you to share him with us

  • @LeafsAndCars
    @LeafsAndCars Год назад +2

    As if this lady hasn't been through enough already!

  • @QueenofDarkness778
    @QueenofDarkness778 Год назад

    Condolences to the family of this special young man

  • @joannahamilton3871
    @joannahamilton3871 Год назад

    So upset. RIP Marky! Beautiful soul! 🙏🏼🙏🏼🙏🏼🙏🏼

  • @donnad5064
    @donnad5064 Год назад +1

    When I was young I knew a girl with these same symptoms. Her mother said she was allergic to the sun and that’s why she couldn’t come outside to play

  • @JORDANLEWISFILM
    @JORDANLEWISFILM 3 года назад +5

    😢 stay strong

  • @keithbarton9859
    @keithbarton9859 9 месяцев назад

    Young lady, you are the woman in The Book of Proverbs 31.👏👏👏👏👏👏that is why your son a master of positivity.

  • @leslielong9149
    @leslielong9149 Год назад +4

    These people are gifts from God for the rest of us to learn life

  • @suzymoroka297
    @suzymoroka297 Год назад +1

    What is wrong with giving people the option of whether they want to watch your videos or not?

  • @paulinemcallister9855
    @paulinemcallister9855 Год назад

    What a warrior and that smile never seen one like it wonderful god bless wee man xmiss you nanapollyx 🙏 blessings to you mumand dad done a great job he love you so much and his dog❤

  • @marthadiaz4521
    @marthadiaz4521 Год назад +1

    A veces no sabemos porque la vida nos pone a prueba y mucho menos a un angelito como Marky, admirable tanto él como la mamá que sabiendo la realidad de perderlo mostró siempre fe ante todo!!! 👏👏👏👏👏

  • @gsxrmand
    @gsxrmand Год назад +2

    So wrong to block clip with Marky, many could learn from hes strenght, hes good behavior towards humans, and hes dogs, here i would say especially dogs, always alert, how are you doing, love you mama, yes it was not nice to watch him suffer, but who could fight as he did ? shame tik tok.

  • @mitch19636
    @mitch19636 2 года назад +2

    Incredible.

  • @ravenbrown74
    @ravenbrown74 Год назад +2

    Lord you took Marky in your arms and now he’s not hurting anymore
    Please Lord Jesus Christ help his family
    Thank you Lord Jesus
    Prayers are with the loving family Marky is beautiful Angel

  • @brittanyking2029
    @brittanyking2029 Год назад

    He had a wonderful heart

  • @susankenney7536
    @susankenney7536 Год назад

    When did he pass on I had just started watching the videos

  • @bryn3652
    @bryn3652 Год назад

    I think marky had the worst symptoms of this disease yet was so positive and inspired many

  • @ChrisHughes-q1v
    @ChrisHughes-q1v Год назад

    Marky. You were such a hero. More of man than I could ever hope to be. Thank You Marky. You are a Rock.

  • @geisalagordon9966
    @geisalagordon9966 3 года назад +4

    Know a woman who loss 2 of her children to this skin condition before either was w years of age.

  • @jamieerwin5476
    @jamieerwin5476 Год назад

    R.I.P MARKY. 💔🙏♥️

  • @amypope9098
    @amypope9098 Год назад

    What a wonderful heart he had 🙏

  • @cynthiahannum4878
    @cynthiahannum4878 Год назад +1

    My deepest condolences to you and your family. Thankyou Marky and RIP.

  • @jakebuttrum6826
    @jakebuttrum6826 5 месяцев назад

    The first time I've seen the young man was on here on a RUclips channel called SBSK

  • @mariag5756
    @mariag5756 Год назад

    So hard to watch this and not cry.

  • @MollyDoss-l5z
    @MollyDoss-l5z Год назад

    Why shouldn't you be able to go on social media? She is trying to educate people. Also, as human beings we should have compassion and raise these families up in prayer. Bless your whole family.

  • @mitch19636
    @mitch19636 2 года назад +4

    Tik Tok really needs some better parsing so they don't let the obvious attention seekers run amoke on the platform.

  • @fredericdocquois8521
    @fredericdocquois8521 10 месяцев назад

    Supermom and Angel marky, they re warriors

  • @taheerammoore6729
    @taheerammoore6729 2 года назад +5

    God bless 🙌 🙏 ❤

  • @meghanvail1713
    @meghanvail1713 Год назад +1

    This IS WHY LOVE ANIMALS MORE THAN HUMANS. JUST BECAUSE A PERSON IS DIFFERENT FROM SOMEONE ELSE DOESN'T GIVE SOMEONE THE RIGHT TO JUDGE...

  • @jydeinden
    @jydeinden 11 месяцев назад

    I totally understands that mother.. It must have been SO hurtfull...
    Its one thing that you KNOW you are putting your child throu pain, at totally other that someone out there can, and will say "ohh he is too ugly, or to damaged, to have the right to be a human... Thats sad

  • @jeffreygaudreau8412
    @jeffreygaudreau8412 Год назад +2

    I am so sorry that he went through with all this difficulty of growing up I'm so sorry but you're have gone through so much at least they're in peace and together 🙏♥️♥️

  • @susanyochman-xk5vg
    @susanyochman-xk5vg Год назад

    How could you do that he has a beautiful soul ❤️ ♥️ love love love love love love love love him amen