World's Rarest Disease: The Human Mannequin | Documentary

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  • čas přidán 20. 09. 2023
  • Meet a quite extraordinary little boy, who holds the cure to some of the world’s most common diseases. Zach was born on Australia Day, a beautiful smiling baby. The doctors gave him a clean bill of health, and for 18 months his parents thought everything was normal. But as they would discover, little Zach has perhaps the rarest disease known to man - a genetic condition called Fibrodysplasia Ossificans Progressiva, or FOP. There are less than 800 known sufferers worldwide. As he ages, the soft tissue of Zach’s body slowly morphs into a second skeleton. His muscles are turning to bone. But Zach’s family haven’t given up hope.
    This story originally aired on 11th August 2013 on Seven News Australia Sunday Night.
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Komentáře • 1,2K

  • @emke9326
    @emke9326 Před 8 měsíci +2916

    Parents with “normal” kids find it hard to raise their child. I can’t even begin to imagine the struggle this mum goes through every single day. What an awesome mother.

    • @8213apice
      @8213apice Před 8 měsíci +2

      They do have normal kids. Being born with diseases is not normal. However, all kids are precious ❤

    • @stayaway7859
      @stayaway7859 Před 8 měsíci +69

      I spent 30 years in special education .Families are under tremendous strain, it is heartbreaking.

    • @triciac1019
      @triciac1019 Před 8 měsíci +37

      It's hard to raise any child.

    • @nala7658
      @nala7658 Před 8 měsíci +60

      @@triciac1019that’s exactly the point. All children are hard work. Unless you’ve had one with a disability- especially one as severe as this then you don’t understand.

    • @samafara7033
      @samafara7033 Před 8 měsíci +5

      yes you're right ❤

  • @SoCalJellybean
    @SoCalJellybean Před 8 měsíci +1602

    That doctor is a saint.
    I’ve seen him in other FOP documentaries, and I’m so happy to hear how tirelessly he works.

    • @marthaj67
      @marthaj67 Před 8 měsíci

      This originally aired ten years ago! Where has all the research gotten them? There's STILL no cure.
      But we had a "vaccine" for the _CV_ in less than a year! 🤔

    • @breigesheppard8339
      @breigesheppard8339 Před 8 měsíci +27

      God bless him 🙏🏻❤️🍀

    • @samgray49
      @samgray49 Před 7 měsíci +96

      He is, he saved my life in 2009. He was asked to consult on my case because I had all of the symptoms of possible FOP and it wasn't FOP because I didn't have the toe deformity, he immediately realized I had rheumatic fever becaues it has a lot of symptoms like FOP specifically joint pain and stiffness and inflammation. Had he and Doctor Sherly not figured my case out, I would have gone into heart failure and probably would have deveoped rhematic fever related encephalopathy which could have destroyed a lot of my independnece. I have so much respect for him knowing that he is treating a disease that is a death sentence, and he has such passion for it. What's amazing is 14 years later he still sends an occasional letter checking in on me and seeing how I am doing years later. I sent one back recently letting him know that I have mytral valve stenosis and he then emailed me back saying "good thing is that it's treatable, try and put off surgery as far as you possibly can because CRPS can be aggrivated by it. I am glad you are persuing medicine, it's where your heart is, and if you choose to medical school, maybe you can do a fellowship with me."

    • @margitagalbava1158
      @margitagalbava1158 Před 7 měsíci +4

      Krásny zlatý chlapec Boh vám žehnaj prajem vám veľa zdravia veľká radosť ako sa teší zo života

    • @Nanno00
      @Nanno00 Před 3 měsíci +2

      @@samgray49when you say “CRPS” are you referring to Complex Regional Pain Syndrome “? If so, do you have that?

  • @Bonobos922
    @Bonobos922 Před 8 měsíci +183

    I love this doctor for not charging these patients.

    • @tinawindham6958
      @tinawindham6958 Před 8 měsíci +17

      Yes. He could be charging the most outrageous prices because it’s so rare. He’s rare. Says everything about him❤️

    • @helenamcginty4920
      @helenamcginty4920 Před 5 měsíci +15

      Australia has a medicare system. Its not complete cover as in many European countries but us light years away from yhe US system.
      Look it up for details.

    • @Heavyisthecrown
      @Heavyisthecrown Před 23 dny +2

      @@helenamcginty4920America has a Medicare system? If you are poor or anyone under 18 that needs free insurance you get it. Also we have children’s hospitals where they do not charge anyone anything.

    • @ernr7084
      @ernr7084 Před 13 dny +1

      ​@@Heavyisthecrownshhh don't educate American haters that think online memes about us Healthcare system are 100% truth

    • @Equestrianista_
      @Equestrianista_ Před 10 dny

      @@Heavyisthecrown This is not true for all states. For example, Florida is one of several states that did NOT approve medicaid expansion and the ONLY way to get Medicaid in Florida is: Have a child under 18 while being low income OR be legally disabled (such as collecting SSI or SSDI) other than that NO ONE will qualify for medicaid for JUST being low enough income. Now there are states that it does work that way for example, California DOES offer medi-cal (their version of Medicaid) to ANYONE who is low enough income. I know this from personal experience. I am a Floridian but lived in California for 10 years and was able to get Medi-Cal while there (which was AMAZING i got help for my fibromyalgia, social anxiety and agoraphobia and amazing dental care with root canals and fillings and extractions!) but coming back to Florida (since 2015) there is no help for me here (despite even being homeless in a tent for 6 months back in 2018). I am fighting for SSI however, and finally have my appointments for a physical doctor and a mental health doctor being paid for by Social Security to assess my illnesses (since do to not being able to afford any doctors and not being able to get medicaid I have no records recent/since I had to leave California, sadly)

  • @taramatheis1451
    @taramatheis1451 Před 8 měsíci +884

    Zachs mother is an angel. Her love and devotion to him and lack of self pity touches my heart. Bless little Zach and all FOP sufferers. I've watched many FOP videos- these people are truly warriors. I'm so glad the Doctor & his team are nearing a breakthrough. 🙏

    • @aussiefurbymogwaifan6621
      @aussiefurbymogwaifan6621 Před 6 měsíci

      Disabled people aren’t "warriors" for living their lives

    • @phaedrapage4217
      @phaedrapage4217 Před 6 měsíci +6

      She has such a good attitude, she's obviously very strong.

    • @luciaconn6788
      @luciaconn6788 Před 5 měsíci +4

      They inspire love in others, so great it spills over.

    • @iamninjabeth
      @iamninjabeth Před 3 měsíci +1

      She really is so lovely, strong, and supportive. I love her.

  • @ourcreativebeehive
    @ourcreativebeehive Před 5 měsíci +299

    I have a one in a billion baby. She was almost 16 when the condition was finally diagnosed. She is 23 years old, and we are excited for Christmas. 2024 starts with a 6 hour drive to another state to see what can be done about a massive tumor in her back and spine. We realize every day with her is a gift... even the bad days as it may be our last.❤❤

  • @hazelem1266
    @hazelem1266 Před 8 měsíci +986

    Children are just incredible and wonderful. They know he’s different, but they don’t treat him differently. Good luck Zack and awesome mum.

    • @mirandafitch1013
      @mirandafitch1013 Před 8 měsíci +25

      It was amazing to me how well the young kids treated him. ❤

    • @annripley1964
      @annripley1964 Před 8 měsíci +50

      @@mirandafitch1013children are born naturally kind and tolerant, it is the people around them who cause them to change. So sad to see that happen.

    • @proletar1660
      @proletar1660 Před 8 měsíci +22

      They were raised the right way. I hope they remain that helpful for the rest of their lives.

    • @bernarditamedina2452
      @bernarditamedina2452 Před 7 měsíci +28

      That’s good but children usually are mean an cruel in groups when they spot someone different and also weak…

    • @carolinedowdeswell4897
      @carolinedowdeswell4897 Před 7 měsíci +8

      My son was in mainstream school till secondary age and those kids adored and nurtured him so beautifully, even now (he's 19) we still hear from lots of them and they make a fuss of him like hrs their best friend.

  • @itsmelive
    @itsmelive Před 6 měsíci +111

    Mum laughing through tears, "she's a rascal." Just from that answer you can tell how natural and close their relationship is

  • @loomonda18
    @loomonda18 Před 8 měsíci +200

    I think one of the worst things is to put children like this in separate classes, I'm so glad she put him in a normal school/regular class. Wishing him the best

    • @tinawindham6958
      @tinawindham6958 Před 8 měsíci +17

      Yes, it’s good for him and good for other kids to learn about empathy and differences.

    • @loomonda18
      @loomonda18 Před 8 měsíci

      @@tinawindham6958 💯

    • @c8Lorraine1
      @c8Lorraine1 Před 8 měsíci +12

      So lucky the normal kids didn’t bully him mercilessly

    • @Dave-tk6lw
      @Dave-tk6lw Před 8 měsíci +4

      ​@@c8Lorraine1he'll sadly get bullied in both classes

    • @MeghannRoselee
      @MeghannRoselee Před 7 měsíci +11

      No the worst thing is not helping kids when they need to be in seperate classes if they could have special Ed in average classroom they would but I’ve seen special Ed in average classes and it’s not optimal . Socializing is very important but so is getting needs met

  • @birgittabirgersdatter8082
    @birgittabirgersdatter8082 Před 8 měsíci +800

    It’s a dreadful shame that poor Zac’s misdiagnoses have caused him so much pain and suffering. If he had been diagnosed earlier his life, and that of his family, would have been so much better. Paediatricians need to research every thing they see on a baby that is not perfectly normal, it might be very critical for the baby. Blessings to both these families.

    • @ReineDeLaSeine14
      @ReineDeLaSeine14 Před 8 měsíci +36

      I have different genetic conditions, but I was just normal enough that my disorder wasn’t caught.

    • @BekindRewind71
      @BekindRewind71 Před 8 měsíci

      Yes it’s a shame, but certainly not the fault of the doctor! When you hear hoofbeats, you assume it’s a horse, not a zebra. If drs tested for every single rare disease on every case with different symptoms, that’s all they would be doing and it would bankrupt health insurers. As a nurse who did labor and delivery, I’ve seen it all and 90% of the time, it’s nothing. Sad but not negligent.

    • @gwendixon74
      @gwendixon74 Před 8 měsíci +9

      maybe it time to screen each birth

    • @SewardWriter
      @SewardWriter Před 8 měsíci +5

      It's more common than you think, and it can have horrific consequences.

    • @SewardWriter
      @SewardWriter Před 8 měsíci +7

      ​@@ReineDeLaSeine14Ehlers-Danlos, by chance?

  • @lisamoore8858
    @lisamoore8858 Před 8 měsíci +304

    My aunt had this disease. She looked like a doll when she passed away. I wish him to have love and he shows his love, it's so bright. What a happy boy and that smile. ❤

    • @nenep1872
      @nenep1872 Před 8 měsíci +12

      I'm so sorry for your loss, how old was she?

    • @GRuiz-hd8bt
      @GRuiz-hd8bt Před 8 měsíci +5

      Yeah how old was she was she 50?

    • @dontfckwithspiders5684
      @dontfckwithspiders5684 Před 6 měsíci +7

      I don't know why they call it that, they don't look like mannequins or dolls.

    • @imLumineux
      @imLumineux Před 2 měsíci +4

      @@dontfckwithspiders5684 The video explains it at 1:40
      but essentially the connective tissues and muscles turn into bone, which stiffen up the body until movement is no longer possible, just like how a mannequin cannot move.

  • @dykesmcgee3136
    @dykesmcgee3136 Před 7 měsíci +139

    it’s so good to see zach’s classmates respect his differences! such a sweet little guy. and his mother is incredible.

  • @mind8906
    @mind8906 Před 8 měsíci +162

    That lady is a total boss. I’m glad her son has her and I’m glad she has her son ❤

  • @shroomiedoom5289
    @shroomiedoom5289 Před 6 měsíci +29

    The kids at the preschool are so patient and treat him like a normal kid they’ve been raised very well

    • @hay_Z2021
      @hay_Z2021 Před 19 dny

      Right?? Such a good thing to see, ❤ I was worried he may be bullied

  • @jackieprice6666
    @jackieprice6666 Před 8 měsíci +60

    These children are the hero’s. They don’t complain, they go with the flow and make the best of their situation, and they keep plugging away day in and day out just living in their normal way.

    • @user-fm2iw3um3u
      @user-fm2iw3um3u Před 3 měsíci

      Your comment should be top. Much respect to you and your thoughts. Much love.

  • @TheTonialadd
    @TheTonialadd Před 8 měsíci +150

    This show originally aired in 2013. It would be nice to see an update.

    • @marloflanagan7421
      @marloflanagan7421 Před 3 měsíci +27

      According to the internet, Zach was still alive in 2019.

  • @linda-louiseanthony9802
    @linda-louiseanthony9802 Před 8 měsíci +188

    So glad this amazing medical team is close to finding a cure for this awful disease. Louise and Zack are amazing as are their mothers. Respect ❤

    • @Animals_Gone_wild
      @Animals_Gone_wild Před 14 dny

      With such a small pool of candidates to do study on that might be a cute.
      How do you stop a body from producing calcium

  • @johnmech4617
    @johnmech4617 Před 8 měsíci +109

    To Zacks mum. Lady crying is good for the soul, you should cry. You are an incredible woman with an amazing little boy, my grandson has Autism and my son was the same, he didn't cry, but when he let it out it made things a lot better, he's such a great dad. Zack is a kid so it won't upset him to see you cry a bit, tears of love. I pray for these people, no one asked for these crippling and fatal diseases, it's not why me? It's as this lady says she just gets on with it. What a great story.

    • @SoCalJellybean
      @SoCalJellybean Před 8 měsíci +1

      What in the heck is “lady crying”?? 🤨

    • @marthaj67
      @marthaj67 Před 8 měsíci +9

      @@SoCalJellybean Punctuation DOES make a difference, doesn't it?
      _"Lady, crying is good for the soul...."_
      Social media has destroyed written language.

    • @AmieMorley-st6tz
      @AmieMorley-st6tz Před 3 měsíci +1

      ​@marthaj67
      Don't blame social media for it. There are plenty of people, like me, who are addicted to social media but still use proper spelling, grammar, punctuation etc. I like reading and writing, I think words can be works of art.
      Not everyone has had the education I have had, not everyone speaks English as their first language, and, not everyone cares like we do. It's not necessarily my generations fault, or social media's fault.

    • @johnmech4617
      @johnmech4617 Před 3 měsíci

      @@AmieMorley-st6tz I think your replied to the wrong post lady, I said nothing about social media, this was to comfort Zacks mum.

    • @AmieMorley-st6tz
      @AmieMorley-st6tz Před 3 měsíci

      @johnmech4617
      Also I loved reading your comment and I'm sorry for the confusion
      Edit: Also, is that a fellow Aussie I spy? Ayyyyy

  • @spookysydney
    @spookysydney Před 4 měsíci +27

    Seeing Zach’s mother cry and then apologize for it, made my heart shatter. She is truly an angel and it’s heartbreaking to hear this sweet boy struggle everyday. Hearing the doctors misdiagnosis him and ultimately trigger his disease is absolutely maddening. I wish all the comfort to those who struggle everyday and hope they can find a cure 💜

  • @adam1885282
    @adam1885282 Před 7 měsíci +7

    I can’t believe producers took her to the store to get that shot with the mannequin

  • @crow_feather
    @crow_feather Před 7 měsíci +33

    I was a caretaker for a woman with this disease. She was so beautifully, wonderfully full of life, despite being bound to an electric wheelchair! I feel honored to have gotten to have been a part of her life!

  • @gkindustrialmachine1
    @gkindustrialmachine1 Před 7 měsíci +46

    Zack's Mom is awesome. When she said she never cried, I want her to know I cried for her. What a wonderful woman and Mother.

  • @lorrettalewis1766
    @lorrettalewis1766 Před 8 měsíci +354

    Such an amazing mum, to watch your baby go through such a horrendous disease is heart wrenching.

  • @allthingsmaria
    @allthingsmaria Před 5 měsíci +25

    I"ve never heard of this disease until now. May a cure be found very soon! Wishing these kids and families much strength and courage.

  • @sheryleevermaak6607
    @sheryleevermaak6607 Před 8 měsíci +105

    What amazingly strong, supportive and positive mothers these are! They are angels!

  • @darcie5742
    @darcie5742 Před 8 měsíci +124

    What beautiful mums they both are and what amazing children they have ❤

  • @lilitheden748
    @lilitheden748 Před 8 měsíci +59

    I can’t imagine the pain this mother must have. Seeing your little boy deteriorate day after day, it’s heartbreaking. Zack however seems to be a happy child. He must be a very strong willed boy to be able to go to a “normal “ school. It must be exhausting. His mum is a saint. It’s clear she loves her son to death.

  • @tryphenarose384
    @tryphenarose384 Před 8 měsíci +109

    Bless the doctors who are working tirelessly at finding a cure to such a terrible disease. It's so hard to watch that little boy suffer the way he has. Love the parents outlook on the situation though, that they don't take any of it for granted.

    • @marthaj67
      @marthaj67 Před 8 měsíci +7

      This was originally aired ten years ago. There's STILL no cure.

    • @tryphenarose384
      @tryphenarose384 Před 8 měsíci

      @@marthaj67 There is still no cure for a lot of things. Doctors aren't miracle workers, and can only do so much.

    • @gabs1224
      @gabs1224 Před 8 měsíci +3

      @@marthaj67 TEN years ago. Well, i went from hopeful to disappointed. :/

    • @hyogacamus7400
      @hyogacamus7400 Před 8 měsíci +1

      There isn’t a cure but there is a drug that is being registered globally to help with the quality of life. Sadly the European medicine agency did not recommend the product to be approved for use, there is still hope for many countries. ❤❤ there is always hope.

    • @QueenSunstar
      @QueenSunstar Před 7 měsíci

      The gene responsible has been identified. It’s how to deal with it that’s the problem.

  • @carolpetherick1037
    @carolpetherick1037 Před 8 měsíci +37

    This little boy chose the right mother .

  • @SteveRadich1928
    @SteveRadich1928 Před 8 měsíci +83

    God bless you little man! ❤

  • @jodibrooklyn1033
    @jodibrooklyn1033 Před 8 měsíci +80

    The video ended and I'm still wiping tears. This was very touching and emotional to watch. My utmost respect to both families. Zach's mom really got to me. I just wanted to give her a hug.

  • @dianerawlings5979
    @dianerawlings5979 Před 7 měsíci +9

    I looked after a man with FOP in the UK for 20 years,he was remarkable, he died 11th August 2022 of chest infection, pneumonia and sepsis, he was 57,I miss him so much,I wish you all love xxx❤❤❤

  • @debbieflaherty1975
    @debbieflaherty1975 Před 8 měsíci +30

    What a handsome lad.
    Edit: The little boy sitting next to him in school is absolutely precious.
    I loved his interaction with Zach!!!!

  • @unsocialbutterfly5760
    @unsocialbutterfly5760 Před 8 měsíci +412

    What a horrible disease. Makes you think about how much we take for granted…especially our health. Children are incredibly resilient. My son has had cancer since he was 5, so I understand this mothers pain and how difficult it is to watch your child get such an unfair card dealt. Sounds like funding should be directed into this research, not only for the sufferers of this disease, but all the advantages that the cure will also create. Normally funding into rare conditions is not there, because pharmaceutical companies won’t make much profit out of curing a small percentage of people, so they rather put money into research of diseases that effect a large percentage of the population, like breast cancer, over a rarer paediatric cancer. But this will help so many medical issues, hope they find what they need.

    • @TheZippy72
      @TheZippy72 Před 8 měsíci +16

      I wish your son also a full and fast recovery and send prayers to ease his discomfort 🙏🏼

    • @JBoo
      @JBoo Před 8 měsíci +10

      Took me a while to get a geneticist who specializes in my progressive, rare genetic disease

    • @dant-h-fp9qe
      @dant-h-fp9qe Před 8 měsíci +1

      @@TheZippy72Ibwant all of His illness pain and suffring and illness cured and destroyed and tnrown inro the pit of hell

    • @ReineDeLaSeine14
      @ReineDeLaSeine14 Před 8 měsíci +7

      Yeah, a lot of people don’t realize the treatments that can come for a wide array of conditions from a trial for an orphan disease.

    • @dant-h-fp9qe
      @dant-h-fp9qe Před 8 měsíci +1

      @@ReineDeLaSeine14 I hope they find a cure for orohandesease too

  • @Bunbur
    @Bunbur Před 8 měsíci +57

    What a terrible thing for a child to go through, he's so brave for just pushing on; sending so much love to him and his family.

  • @dreamsteddybearsmaster
    @dreamsteddybearsmaster Před 8 měsíci +170

    I remember reading the Australian teenage girl staple GIRLFRIEND magazine and I came across Louise's story. It was scary then but even more so now considering there are 8 cases in Australia alone and 800 including hers and Zach's worldwide. They're both so resilient!!
    EDIT: Since this aired 10 years it would be nice to receive an update about how Zach and Louise are doing now. And how far we have progressed in the research for FOP.... has there been any breakthroughs by the Doctor Fred Kaplan and his team???

    • @QueenSunstar
      @QueenSunstar Před 7 měsíci

      The gene responsible has been identified.

    • @leeanne1703
      @leeanne1703 Před 6 měsíci

      I'd also like to know

    • @OneOfUsHere
      @OneOfUsHere Před 6 měsíci +4

      Having just Googled Dr. Kaplan I'm sorry to say there is still no cure.

    • @leeanne1703
      @leeanne1703 Před 6 měsíci +1

      @@OneOfUsHere awe 😢

    • @kitkakitteh
      @kitkakitteh Před 6 měsíci +4

      Crispr will eventually help. And the mRNA vaccine research will give it a boost.

  • @elsands9774
    @elsands9774 Před 8 měsíci +42

    Both these mothers are the most beautiful individuals. You can feel their love, their beautiful souls ❤ Sending many blessings to the mothers, their families and their amazing beautiful children.

  • @carsonc6659
    @carsonc6659 Před 8 měsíci +50

    Beautiful mother. God bless her and her lovely son! 🙏🏻

    • @kellydalstok8900
      @kellydalstok8900 Před 7 měsíci

      If god was really good he wouldn’t have been born with this disease. It’s almost like there is no god and sh!t just happens.

  • @ballet07
    @ballet07 Před 8 měsíci +23

    Zach and his Mum are the most evolved human beings I've ever witnessed. Sending them love!❤

  • @djaminbartlett8679
    @djaminbartlett8679 Před 8 měsíci +15

    These parents deserve enormous praise, as do the people who are living with this disease. It opened my eyes as to how lucky I have been in my life ❤

  • @hamilcross
    @hamilcross Před 8 měsíci +10

    zach's mother's love was so palpable from the jump, what an incredible woman. both of them are frankly.

  • @shieh.4743
    @shieh.4743 Před 8 měsíci +12

    This woman is such an inspiration. She looks life right in the eye and, with no sense of ego, keeps going. I strive to be this selfless.

  • @sammason136
    @sammason136 Před 8 měsíci +27

    What a beautiful mother and what a strong little boy ❤ ya Zach

  • @MushroomMamaa
    @MushroomMamaa Před 7 měsíci +6

    Omg as a medical momma I am so impressed with his mom. She clearly does WHATEVER it takes and the hospital life is exhausting and often causes you to lose jobs and time with your other kids but you just keep pushing because they are so worth it❤

  • @peristiloperis7789
    @peristiloperis7789 Před 8 měsíci +56

    So sad. I hope they find the cure.

    • @marthaj67
      @marthaj67 Před 8 měsíci +5

      They haven't, and it's been ten years since this originally aired.

    • @nathanaelmcmahan872
      @nathanaelmcmahan872 Před 7 měsíci

      Unfortunately, chromosomal diseases rarely have cures. They're brewed right into us. It takes transforming or recoding genes. You can possibly take them out while they're an embryo, but once the baby is big, it's too late. Also, eugenics is illegal, I think.

    • @Animals_Gone_wild
      @Animals_Gone_wild Před 14 dny

      ​@@marthaj67with a small amount of people to properly study makes it a next to impossible to do studies

  • @user-uz9it9po1u
    @user-uz9it9po1u Před 6 měsíci +6

    Zachs Mom is a wonderful soul. They are blessed to have each other. Perfect mom and son❤.

  • @maighaleb786
    @maighaleb786 Před 8 měsíci +29

    What an amazing and absolutely pressious little boy. He’s just amazing. He really is a super hero. And his mother, I don’t even have words. Her
    Live and compassion and both of their resilience is one of the most beautiful things I’ve ever seen.

  • @truegemrn
    @truegemrn Před 3 měsíci +2

    People with severe illnesses such as these are always so humble. Adversity can create some beautiful souls.

  • @rushiaj1222
    @rushiaj1222 Před 2 měsíci +1

    Children are awesome. I love how his little classmates treat him like everyone else. They know he has differences from them but they don’t care. That’s their friend. It just shows that cruelty and hatred are learned behaviors. Most children will be friendly if you’re friendly ❤ Good for this mom for not keeping him from having those experiences. She could have easily kept him home and did school there. I’m glad he wasn’t robbed of that. Especially since his illness will take away so many other experiences.

  • @hots4jc
    @hots4jc Před 8 měsíci +15

    What an amazing mom! Praying for that precious boy.

  • @Samantika1983
    @Samantika1983 Před 7 měsíci +5

    What an impressive young man. His mother is just a beautiful human being. I wish them the absolute best and really hope something is found that can help individuals with this condition.

  • @wanttruth3876
    @wanttruth3876 Před 2 měsíci +1

    Look at that sweet face. He's a happy child. Bless you mom, for your patience and endurance. ❤

  • @donnabaardsen5372
    @donnabaardsen5372 Před 8 měsíci +17

    Two amazing, beautiful children. God bless them and their family ❤️🙏

  • @monicahyland8641
    @monicahyland8641 Před 8 měsíci +17

    Zach is such a amazing kid,a little doll ❤. I hate the he was so misdiagnosed so many times that the Drs have hurt him more than helped. Lots of love to Zach and his family

  • @glasswingbutterfly
    @glasswingbutterfly Před 8 měsíci +36

    It's been 10 years since this program originally aired. I hope that a cure or treatment has been found. I'll have to research that. My heart goes out to those affected by this. I hope those profiled in this video are doing well.

    • @nightowl9161
      @nightowl9161 Před 7 měsíci +17

      For some that might come accross this comment, as of yet - oct 2023 - there are treatments like corticosteroids to help with flare ups, but there is no cure. Yet.

  • @hangin-in-thereawesome4245
    @hangin-in-thereawesome4245 Před 8 měsíci +15

    Prayers for these two moms that are so strong! Blessings on those wonderful children that just keep carrying on!

  • @deidrekoehler2882
    @deidrekoehler2882 Před 8 měsíci +181

    When your child is born, you become a mother bear and you will do anything for your child. That baby is a gift, no matter how disabled they are or how healthy they are. The moment you hold them, they are part of you.

    • @dant-h-fp9qe
      @dant-h-fp9qe Před 8 měsíci

      sure upis so upis cancer and down syndrome and orada willi syndromme, and parkinsons deasease and mermaids syndrome and thormedial dwarf syndrome

    • @vickiefinney6073
      @vickiefinney6073 Před 8 měsíci +6

      Children are a gift from God. Psalms 127:3

    • @melissadehart9306
      @melissadehart9306 Před 8 měsíci +2

      All mothers are bears?

    • @vickiefinney6073
      @vickiefinney6073 Před 8 měsíci +9

      @@melissadehart9306 I'm a moma bear, come near my children and you'll find out 🐻

    • @dant-h-fp9qe
      @dant-h-fp9qe Před 8 měsíci

      @@melissadehart9306 uh uh nit true

  • @lisaannvieira9225
    @lisaannvieira9225 Před 8 měsíci +17

    Prayers for these kids and their families. They are an inspiration.

  • @autumnquigley1134
    @autumnquigley1134 Před 6 měsíci +4

    BLESS THESE KIDS & THEIR FAMILES!!!!! these are truly beautiful human beings! Despite their sufferings & hardships they are selfless & loving. They keep hope alive & dont give up.

  • @lisajeter9511
    @lisajeter9511 Před 2 měsíci +1

    Zach’s Mom is so strong and such an Angel for her baby boy. I hope he lives life to its fullest capacity. This world and diseases can be so cruel
    Zach was so Lucky to have you for his Mom!

  • @samuelstoner5651
    @samuelstoner5651 Před dnem

    Bless Zach's heart. Bless Louise's heart. So many people, with so much more, do not realize how good they have it.

  • @SpiritMorningstar17
    @SpiritMorningstar17 Před 7 měsíci +5

    I’ve been watching a lot on FOP and its honestly a very terrible thing. It’s great that zack has a very supporting family and i believe its good that they put him in a “normal” school, because it will help kids his age learn that everyone is different and to except everyone….I honestly hope in the future there is a cure for FOP, these people are amazing

  • @sithlordhibiscus9936
    @sithlordhibiscus9936 Před 8 měsíci +11

    Well my earache isn’t nearly as awful as i thought five minutes ago. I don’t think I’d want to live like this but this guy gives me hope for those who have it.

    • @tinawindham6958
      @tinawindham6958 Před 8 měsíci +2

      It isn’t a choice…you could do it if you had to👍🏻

  • @JuliaBL28
    @JuliaBL28 Před 26 dny +1

    In Dr. Kaplan's office the first photo of his childhood patients caught my eye! It was my nephew, Cameron from Florida, holding the American flag. He must be nearing almost 30 years since his initial diagnosis. I don't get to see him too much but I certainly am proud of him. Thank you Dr. Kaplan for working so diligently on behalf of these children.

  • @JennaGetsCreative
    @JennaGetsCreative Před 8 měsíci +8

    My daughter is in first grade right now, doing what Zach and his peers were doing in this video. I can't imagine knowing for certain, looking at her happy little face, that I'm going to outlive her. I don't wish that on any parent.

    • @tinawindham6958
      @tinawindham6958 Před 8 měsíci

      It’s heartbreaking but none of us really know what the future holds👍🏻✌️

    • @JennaGetsCreative
      @JennaGetsCreative Před 8 měsíci

      @@tinawindham6958 That's true, but in this case these parents can be fairly certain that no cure that reverses this damage would be found in time to save their kids who are only expected to live to the age the parents likely were when they became parents.

  • @marlinmangundayao7489
    @marlinmangundayao7489 Před 8 měsíci +5

    I am heartbroken thinking of the pain the parents feel for their children. Just seeing my child having fevers make me lose my mind, i can't fathom the feelings they have.

  • @CatsJP
    @CatsJP Před 8 měsíci +17

    All people are precious humans and we deserve only the best…but unfortunately that is not the case….you don’t realise just how good things can be and how privileged you are to live a normal life until you see a story like this…..never give up hope….

  • @mspixiestitch
    @mspixiestitch Před 8 měsíci +10

    This little boy and his mother are so amazing. I hope that doctors find a cure soon, this could change so many rare strong souls lives.

  • @SeaCheles.Love.4
    @SeaCheles.Love.4 Před 8 měsíci +6

    So glad it has a name, and there are people studying and researching now. Bless you all…!

  • @Bonobos922
    @Bonobos922 Před 8 měsíci +6

    Oh this sweet handsome little boy. I will pray for him. I do hope the doctors can find a cure or treatment for Zack. Hi sweet Zack! I love you! ❤

  • @Stardust_7273
    @Stardust_7273 Před 6 měsíci +4

    I saw another show where the girl had a swelling on her back near her shoulder and they thought it was a tumor, and they operated, finding more and more of this growth, and ended up amputating her shoulder and arm. They found out afterward what her real diagnosis was and also found out the amputation was completely unnecessary. It's tragic how this disease is misdiagnosed and thus sufferers have these procedures that just makes everything so much worse.

  • @otomesavesus6779
    @otomesavesus6779 Před 7 měsíci +3

    This hurts my heart for this poor sweet boy and everyone who suffers from this. Zack is an amazing little warrior who is teaching other kids to be kind towards people who are different yet still just like everyone else. I hope God continues to watch over this sweet boy and everyone who suffers from this disease and makes the day they unfortunately pass an easy peaceful moment. Parents and Drs like these give me hope for humanity and I find myself struggling with having hope in humanity daily. There are far to many cruel people without any empathy or compassion for others. God bless these partners and drs

  • @KrystynaE1967
    @KrystynaE1967 Před 8 měsíci +2

    The girl is so beautiful. She could be a model. Absolutely gorgeous. Another brave soul. I pray that they aren't in much pain.

    • @grandmaLilith
      @grandmaLilith Před 24 dny

      What are your qualifications for being a model? Because they aren't the same as the industry's hahahaha

  • @pinkykaur8760
    @pinkykaur8760 Před 8 měsíci +7

    Hands down to her and her son for being incredibly strong and not giving up. I’m a mom and I can’t even imagine her pain to see her child suffer in pain. The mother and daughter have a really beautiful and strong relationship. You’re the real Heroes!

  • @Glitter221
    @Glitter221 Před 8 měsíci +5

    I am praying for a miracle of complete recovery for these beautiful kids and their families. And for the wonderful doctor dedicating his life to find a cure.

  • @aquastar4336
    @aquastar4336 Před 8 měsíci +3

    That doctor really loves his job.
    And he is great at it too💯💯💯

  • @Listening4Gabriel
    @Listening4Gabriel Před 8 měsíci +50

    My prayers are with those families. I pray a cure is discovered soon. 🙏🏾✝️

    • @lienbijs1205
      @lienbijs1205 Před 8 měsíci +4

      Prayers doesn't cure anything, you actually know that.

    • @7996hobguy
      @7996hobguy Před 8 měsíci +1

      Not much money in only having 800 patients worldwide. Maybe those prayers will come through.

    • @ElizaDolittle
      @ElizaDolittle Před 8 měsíci

      @@lienbijs1205 the prayer is for finding a cure...and yes, they do work.

    • @marthaj67
      @marthaj67 Před 8 měsíci +3

      ​@@lienbijs1205 There have been scientific studies that show the efficacy of prayer. How sad that you will likely never know the God Who created you....until it's too late.

    • @lienbijs1205
      @lienbijs1205 Před 8 měsíci +9

      @@marthaj67 Where is the source of the scientific studies? How sad that you are wasting your time with a non existing God. What I actually mean is that you shouldn't bring up God and prayers if you are not sure that the person you mention God and prayers believes in God. My son is died and I personally feel people are disrespecting my believe if they tell that my son is in heaven and that they will pray and blabla.

  • @bellaciaocreations5650
    @bellaciaocreations5650 Před 8 měsíci +5

    What an amazing resilient child. He must of gone through so much pain. 😢 I can't imagine the pain mom is going through as well. She can only watch and try to comfort him.

  • @pclare7477
    @pclare7477 Před 8 měsíci +21

    What amazing families with amazing attitudes! ❤

  • @margarethill8121
    @margarethill8121 Před 7 měsíci +3

    It’s the shock to be told your baby is medically not perfect. But in your eyes, they are. When my baby son was born with Haemophilia A, we were determined then, he would always have a normal free upbringing. We allowed him to climb trees and get into the usual childhood pranks. To keep him alive and prevent terrible bleeding, he had numerous intravenous medications. To help his blood to clot. It was like water. A simple cut or bruise caused his blood to keep flowing. Damaged limbs etc. we had a perfectly normal little boy, until he died aged 13. But we never regretted having him. So all my heart goes out to parents whose babies are born with appalling conditions. But as far as their babies are concerned, they are perfect.

  • @jenv9782
    @jenv9782 Před 7 měsíci +3

    My heart is just breaking - Zach is the cutest little mite; God bless him and keep him. Bless his mother and all his loved ones. Much love from California to him and others with this condition!

  • @Ensemblesuite
    @Ensemblesuite Před 8 měsíci +4

    I love this little boy. What a beautiful person. Mom- you are such a wonderful mother. Man- how inspiring!

  • @adrienel6600
    @adrienel6600 Před 8 měsíci +14

    Wow these families strength is absolutely amazing!!!

  • @aliwooz913
    @aliwooz913 Před 6 měsíci +1

    This is extremely sad :/ nobody should have to suffer like this. Pray they live as long as possible.

  • @user-nl8vh2cj6g
    @user-nl8vh2cj6g Před 8 měsíci +15

    What amazing people they are I hope a cure is found soon. They have more get up and go than a lot of people who are healthy God bless you all.

    • @marthaj67
      @marthaj67 Před 8 měsíci +1

      Nope! This originally aired ten years ago, according to the description. There's _still_ no cure.

  • @paulastrong7571
    @paulastrong7571 Před 6 měsíci +3

    What a horrible disease. Amazing they have the attitude they do. Bless them 🙏

  • @bethanybouley2990
    @bethanybouley2990 Před 8 měsíci +5

    This doctor is incredible....

  • @portcityminis
    @portcityminis Před 4 měsíci +1

    Zack is amazing. His mother is an angel. If you read this i am praying hard for you and zack

  • @zeefje4117
    @zeefje4117 Před 7 měsíci +2

    The first mom is such a beautiful person with a beautiful son. I love the way she talks about her son. I wich her the best of luck and a lot more happy years

  • @Amanda.Ray02
    @Amanda.Ray02 Před 8 měsíci +8

    Amazing mother… your strength is inspiring ❤

  • @YoMama9021
    @YoMama9021 Před 8 měsíci +3

    What a beautiful, amazing mother. From America, I love you and your son and from my family to yours you’re in my thoughts and hopes. 😊

    • @TheAgentAaron
      @TheAgentAaron Před 8 měsíci

      How politically correct and secular of you. Why not elevate those "thoughts & hopes", that neither alone, nor by your own limited human power, will do a thing and offer prayers for this family and their son, which can and will do exponentially more than you could ever dare dream imaginable?
      It is selfless & most generous of you to offer up such kind words but they must be empowered as we humans do not possess the capability alone other than to simply offer kind words. This family needs a miracle. Pray for them and lift your prayers to God, who will hear your prayerful request and deliver in a way necessary to meet this family's needs 🙏🙏🙏🙏

  • @kinggkongg9694
    @kinggkongg9694 Před 7 měsíci +2

    Poor poor baby it’s so heartbreaking to see and imagine the discomfort and pain

  • @cw4608
    @cw4608 Před 3 měsíci

    These kinds of shows are heartbreaking. Seeing a child battling such debilitating diseases. Bless you beautiful people.

  • @serenitynow288
    @serenitynow288 Před 8 měsíci +6

    What an amazing mother Zack has! Lovely lady ❤

  • @liziwood6370
    @liziwood6370 Před 8 měsíci +5

    Mothers are truly formidable when it comes to their children & these two Mums are incredible in their steadfast love & positivity with all that their children have to deal with. Seeing their faces beaming with pride & immense love when they talk about children tells you everything you need to know about what kind of future lies ahead for both these FOP survivors.

  • @kat.699
    @kat.699 Před 2 měsíci

    Cutest little boy, and so aware. This is truly heartbreaking. His mother is truly incredible as well, her devotion and love for her son amazing to watch.

  • @kimberlynoe958
    @kimberlynoe958 Před 6 měsíci

    That is the CUTEST little boy,there is something TRULY delightful that just shines through about him!

  • @FredaFlynn2008
    @FredaFlynn2008 Před 8 měsíci +17

    I hope and pray this wonderful doctor and his team are very close to this cure. 🙏🏻

    • @marthaj67
      @marthaj67 Před 8 měsíci

      Yeah, not so much. If you read the description, you'll see that this originally aired in _2013!_ There's still no cure.

  • @Coco9210
    @Coco9210 Před 8 měsíci +3

    To these wonderful mums, know you're amazing. Your strength and love for your beautiful children just shines through. God bless you and your beautiful children ❤️

  • @user-ny7rt6rt2e
    @user-ny7rt6rt2e Před 8 měsíci +2

    Oh Lord what wonderful Mums that’s a true Mothers love.

  • @victoriagrow30
    @victoriagrow30 Před 6 měsíci +2

    This has
    Me in COMPLETE tears. Thank you so
    Much for sharing your story and to the doctors trying so diligently to find a cure you’re rock stars♥️♥️