7 Year-Old's Muscles Turn to Bone: How Luciana Overcame FOP (Rare Disease Documentary)

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Meet Luciana Wilin, a remarkable 7-year-old girl living with a rare and extraordinary condition called Fibrodysplasia Ossificans Progressiva (FOP). This genetic disorder gradually transforms her muscles and tendons into bone, effectively turning her body into a living statue over time. Luciana's story is one of courage, resilience, and the relentless spirit of a young girl determined to live life to the fullest despite her challenges.
In this touching documentary, follow Luciana's daily life as she navigates the complexities of FOP. From playful moments with her friends to the careful monitoring of flare-ups, Luciana's journey is both heartwarming and inspiring. Discover how she and her family manage her condition, their hopes for the future, and the special bond that keeps them strong.
Timestamps:
0:00 - Introduction to Luciana and FOP
1:30 - Early Signs and Diagnosis
3:45 - Daily Life and Challenges
6:20 - Medical Check-ups and Treatments
9:15 - Luciana's Hopes and Dreams
12:00 - Special Therapies and Activities
14:30 - Family Support and Coping Strategies
17:00 - Raising Awareness about FOP
20:00 - Conclusion and Call to Action
Instagram - @realstoriesdocs
Content licensed from Zig Zag Media. Any queries, please contact us at: owned-enquiries@littledotstudios.com

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30 июн 2024

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Комментарии : 82

@laurielaurie8280 Месяц назад

Horrible disease 💔We take our health for granted. Getting older makes you stiff and hurt everyday but I can only imaging how painful and awful it is what these people with this disease suffer with everyday.

@HannahandCailinLoesch Месяц назад

“She’s driving at the moment, better ring her at the weekend” 🥰 What a sweet, smart, funny girl and supportive mom!

@maryannedelaney Месяц назад

Her mom is so great with her! She is a happy little girl. They will be a great team as she grows. If she sees this, I will be sending lots of prayers.

@65gtotrips Месяц назад

FYI, this documentary is about 18 years old, as Luciana is now 25. If you want to read how Luciana is doing now at age 25, she has an update called ‘A Chat with Luciana’ on the FOP Friends landing page.

@lindarogers4655 25 дней назад

😊😊😊

@Monis188 20 дней назад

You are so right! I think the key to their great bond is the Mum's engagement in Luciana's life. The healthy one. She explains everything to her and makes the whole medical side of her condition understandable for her. I think that strengthens their relationship. Honesty and support

@65gtotrips Месяц назад

@karendarnall1243 Месяц назад

I want to believe Luciana’s condition will not progress any further. I admire her resilience and her mother’s efforts to provide her every opportunity to love and enjoy experiences. Love this little girl.

@Paige980 Месяц назад

Inspirational… she is strong in spirit and a trooper. Mom is giving her confidence and helping her experience a childhood that is as normal as possible and making sure she explores her emotions. Great job Mom!!

@65gtotrips Месяц назад

@jennjeffs4893 Месяц назад

She's a young woman now! I remember seeing this year's ago, she's such a sweet adorable girl! It's great knowing she is still alive!

@dadycreations100 Месяц назад

Good to know it. Do you know also how she's doing now? thanks

@jennjeffs4893 Месяц назад

@@dadycreations100 I'm not sure. I heard she might have IG. U could check.

@65gtotrips Месяц назад

@michellewhyatt4438 Месяц назад

Luciano I've listened & watched your story you're a beautiful little girl you're precious you're brave braver than I am. I'll think of you sweetheart don't give up princess. Loads of love xx

@65gtotrips Месяц назад

@robinwagner3293 Месяц назад

What a beautiful, precious, little girl. I'm amazed at her strength, maturity, and understanding of her condition. Best wishes to you all.

@dadycreations100 Месяц назад

I felt so happy for Luciana among the dolphins! Mom you are doing the right thing wanting to let her having as many experiences as possible now. I wish you both the best ❣

@65gtotrips Месяц назад

@dadycreations100 Месяц назад

@@65gtotrips Thanks a lot

@amysnews6808 Месяц назад

I hate that their marriage fell apart but I really hope it's true that her Dad will always be near by, involved and helping. As the parent of a little girl as well as a son with severe disabilities I know how important it is for a little girl to have their Dad and how important it is to have help with a child that has special needs. I'm very lucky to have a very happy, committed marriage and a loving husband. I couldn't do my son's disabilities without help. But, above that, children in general just need their fathers and sadly so many walk away and consider sending a check for child support, if they even do that, sufficient fatherly involvement. And, a child with special needs probably needs both parents even more than a "normal" child.

@Grandmotherof3 Месяц назад

You are a wonderful caring mother. So strong and supportive! 🙏

@theresarasche3173 Месяц назад

Bless her little heart 💗💖💝. She’s such a trooper and it breaks my heart when she said several times that she just wanted to be normal 💔. She has a great mom! Good luck in the years to come and my prayers are with you all 🙏🤗😁

@crystalmobile7359 Месяц назад

You are doing a Amazing job Moma! She’s Beautiful and Blessed to have you!

@georgiagoodwin2009 11 дней назад

This is such an inspirational and emotional documentary. She is such an incredible girl fighting this horrible disease. Hope Luciana is doing well

@NevaJae Месяц назад

She is the cutest of all pies. 🥧🩷 I wish her the absolute best.

@tintan2001 Месяц назад

She is now a beautiful 25 year old woman.....❤

@Liwantic Месяц назад

Luciana god bless you and your family! All love to you ❤❤🙏🏽🙏🏽

@robinwagner3293 Месяц назад

I can't stop laughing at that phone call though. Sorry. Mummy is driving at the moment. Oh Luciana. We love you.

@user-bk4qx7sj1d Месяц назад

What a horrid rotten disease to happen to this little girl and others who have it😢

@blairariavanderkamp3405 28 дней назад

Poor Luciana, poor Adrian and poor Robert. Robert is far worse off, what a horrific state to be forced to live in.

@Goddess_Nkem Месяц назад

“The condition started when I was 2 years old”… 😟

@rosegarza4887 Месяц назад

Thank you for sharing her story. I really do appreciate it.. 😊😊 do you have an update of where she is now?❤❤ be safe everyone and let’s not take life for granite.

@65gtotrips Месяц назад

@RipVanFish09 Месяц назад

This is gonna sad isn’t it 😢

@melissaarellano5177 Месяц назад

What a bright, happy little soul she is, I wonder how she's doing now?

@65gtotrips Месяц назад

@leece_6702 Месяц назад

Saw this many years ago, wonder how shes doing today. . .

@tintan2001 Месяц назад

She is now a beautiful 25 year old woman....❤

@rockcandyxoxo Месяц назад

Thanks for blurring out everything. Ruined the video

@saammahakala Месяц назад

One of the many visions I've experienced in this life, was waking up inside the statue of a stone Angel hovering in an infinite blue sky filled with other stone Angels at varying heights and depths dispersed far and wide from one another, where i was only able to see out of its left eye. Maybe your daughter is an Angel made manifest in flesh form? Just volunteering another way of viewing her life rather than having her believe she's an abomination compared to humanity's "perfection." Also, our minds/spirit go through many changes through animating numerous forms ranging from mineral to fungi to vegetable and to animals from the minutest to these current forms labeled human and beyond.

@anadee5117 Месяц назад

So her dad just ran away? What a loser. Girls, good luck and best wishes ❤❤

@crystalmobile7359 Месяц назад

I’m wondering since the disease gets worse as she gets older and with growth if her growth was stopped maybe she could keep her current mobility.

@65gtotrips Месяц назад

@barbaralamson7450 Месяц назад

She has to be a young woman by now. I saw this ages ago. I hope they are both doing well.

@65gtotrips Месяц назад

@barbaralamson7450 Месяц назад

@@65gtotrips Thank you very much.

@aew787 Месяц назад

I want to see an update

@niuldo Месяц назад

Povere creature, chissà quanto dolore portano via 🥺🥺🥺

@daleneparole1502 Месяц назад

What is the isotope that has the nickname, The Bone Seeker ??

@flowerfaerie8931 Месяц назад

“How did Luciana overcome FOP?” Oh that’s easy. She didn’t, it’s still going to kill her eventually because the condition is incurable and invariably fatal. GFOH with this clickbait.

@ashleydailey7844 Месяц назад

They should look into maybe getting a service dog or something so she can feel more independent

@65gtotrips Месяц назад

@tracyjohnson3496 26 дней назад

What are you blurring????

@gottabesometime6632 Месяц назад

Luciana, your ballerina moves are some of the best I have ever seen, the toes the feet positions, and your body stance....WOW!!! As for voice, who do you get that awesome raspy deep voice from? Your voice needs to be in a singing session alongside the greatest artists TODAY. It's unlikely that anyone else your age has a voice like you!!!! Reach for the ballerina stars sweet, as YOU are the making of greatness!!!!!

@Lilyandmoomin Месяц назад

This is like the beautiful young lady from Glasgow. they called that program the human mannequin… Where is this little girls Dad?

@Bettinasisrg Месяц назад

It must be so incredibly frustrating for the scientists who know what gene causes this and if we just know how to switch it on or off (whatever is necessary) they would all be cured! We are literally on the very edge of being able to cure so many genetically caused diseases. We just need to stop having more than 2 or 3 kids per family because overpopulation is already a huge problem if we can cure diseases as well then??? I hope all the kids suffering get help.

@elvinkrigsman6956 Месяц назад

I complained to today that my stomach hurt from bad Indian food. I should be ashamed of myself

@theresarasche3173 Месяц назад

No you can complain because it’s real and can be painful. I have back pain that has caused neuropathy’s and I complain too because it’s painful, but this disease is horrible and this little girl is so brave!!!

@Metroid250 26 дней назад

2 things may exist at once. Someone else's pain doesn't invalidate yours

@theresarasche3173 Месяц назад

What a horrible disease 😢😮😢

@heathersmith8731 Месяц назад

Poor baby. 😢 She doesn’t deserve this. Proof there is no some sort of “God”

@theresarasche3173 Месяц назад

This is not God’s fault…it’s called genetics!

@65gtotrips Месяц назад

No, when Adam & Eve sinned against God by eating from the forbidden tree, sin came upon mankind and that includes moral sin and physical disease and genetic disorders. If she believes in Christ for her eternal salvation, she will one day have an eternal glorified body with no disease, sorrow, or pain.

@AllIsWellaus 9 дней назад

I was taught as a child and adult being taught about god, that he created everything. If there is a god, he's got some explaining to do @theresarasche3173

@user-fx1cf2kk1t Месяц назад

I believe this is what Celine Dion is suffering from

@amysnews6808 Месяц назад

No, CD has stiff person syndrome, it is different from FOP. It causes stiffness and rigidity but the muscles don't actually turn to bone. Also, it affects mostly middle aged people where FOP is present at birth.

@magicflounder6959 Месяц назад

No, Celine has stiff person syndrome which affects muscle. FOP displaces damaged tissues with bone.

@elleg3651 Месяц назад

No. It is not the same.

@dadycreations100 Месяц назад

Would Celine Dion have had this, she would never have been Celine Dion ..

@hawkins7000 Месяц назад

Has her mum tried to seek prayers at church for her? Am sure this is deeply spiritual than what we see on the surface. She could visit Christ Embassy church in london.

@Geneviev285 Месяц назад

Don’t bring African fake arrsss pastors into this please..! 🙄🙄 Leave it for those in Africa. So effing dumb..!!!! Lawd!

@Geneviev285 Месяц назад

You are not sure of ANYTHING..! Let that sink in.. 🙄🙄

@hawkins7000 Месяц назад

@@Geneviev285 you may disregard everything about God but that right there,is demonic oppression. God didn't intend for his creation to live this way.

@xirisx1988 Месяц назад

Praying won't help. If praying helped there wouldn't be fop.

@65gtotrips Месяц назад

Prayer is always the first thing to do and prayer does in fact work.

@65gtotrips Месяц назад

Please say a prayer to Jesus Christ to touch her and that man and reverse this hideous disease. When Adam & Eve sinned against God, the result was fallibility in man through disease and sickness.