World's Rarest Disease: The Human Mannequin | Documentary

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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[emke]

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.

[SoCalJellybean]

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

[ourcreativebeehive]

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.❤❤

[taramatheis]

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. 🙏

[Bonobos]

I love this doctor for not charging these patients.

[jackieprasek]

The children in this video are astonishing. They know how to live their life without looking back.

[hazelem]

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

[itsmelive]

Mum laughing through tears, "she's a rascal." Just from that answer you can tell how natural and close their relationship is <3

[lisamoore]

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. ❤

[jackieprice]

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.

[loomonda]

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 <3

[wanttruth]

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

[birgittabirgersdatter]

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.

[crow_feather]

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!

[mind]

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

[gkindustrialmachine]

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.

[allthingsmaria]

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.

[ChannelCez]

This mother is one of the most incredible souls I have ever witnessed on video.

[lorrettalewis]

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

[truegemrn]

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