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Please help two-year-old Siberian toddler who is turning into a real-life stone statue

By The Siberian Times reporter
10 May 2019

A disease that afflicts one in two million transforms soft tissues into bones.

File image of the Stone Man Syndrome shows what’s coming for little Tim Pavlenko from Krasnoyarsk who is turning into a real-life stone statue

Tim Pavlenko from Krasnoyarsk was diagnosed with fibrodysplasia, a genetic disorder in which muscles, tendons and ligaments get replaced by bone, forming a skeleton outside his skeleton. 

This rare disease hits a person in early childhood, first affecting the neck and shoulders and gradually going down, immobilising the patient as the ossifying continues. 

‘Timofey is our youngest child, our much-loved little boy’, said his desperate mother Svetlana Pavlenko, 41. ‘He was born healthy.' 

‘The only tiny concern was that his big toes were a bit curved, but doctors said it wasn’t a problem. At the time we didn’t know that this was the first sign of the Stone Man syndrome. 

‘In a month a lump appeared on his head. 

‘As he grew up, this lump moved down to his neck, shoulders and arms, limiting his movements. 

‘No doctors could explain what was going on, until we travelled to Moscow where we heard the blood-chilling diagnosis of fibrodysplasia. 

‘He cannot raise or bend his arms.

‘He can’t turn his neck, his back got curved and doesn’t straighten.’

Please help two-year-old Siberian toddler who is turning into a real-life stone statue


Please help two-year-old Siberian toddler who is turning into a real-life stone statue


Please help two-year-old Siberian toddler who is turning into a real-life stone statue


Please help two-year-old Siberian toddler who is turning into a real-life stone statue


Please help two-year-old Siberian toddler who is turning into a real-life stone statue

Tim Pavlenko, 2,5 and mother Svetlana. Pictures: Svetlana Pavlenko


Little Tim’s parents know there is no cure for their son’s condition.

Surgery is not an option because it often stimulates the formation of new bones, and other treatments are not available. 

What they hope is to travel to Moscow to see the world’s two leading experts who study the Stone Man syndrome, and meet other families of people affected by the disease. 

There are 70 patients with the confirmed Stone Man syndrome in Russia. 

Worldwide a number of registered patients with this condition is less than 1,000.

Please help two-year-old Siberian toddler who is turning into a real-life stone statue


Please help two-year-old Siberian toddler who is turning into a real-life stone statue


Please help two-year-old Siberian toddler who is turning into a real-life stone statue


Please help two-year-old Siberian toddler who is turning into a real-life stone statue


Please help two-year-old Siberian toddler who is turning into a real-life stone statue

File images of the Stone Man Syndrome, US professor of Orthopaedic Molecular Medicine Frederick Kaplan, who led a pioneering research that helped discover the fibrodysplasia gene

‘We have this unique chance to fly to the major fibrodysplasia conference held in Moscow at the of July. 

‘We are asking for help because we don’t have enough money to pay for our tickets and three day stay in the city’, the married mother-of-two Svetlana said. 

There are a handful of medical professionals who study the Stone Man syndrome. 

One of them is US professor of Orthopaedic Molecular Medicine Frederick Kaplan, who led a pioneering research that helped discover the fibrodysplasia gene. 

A top German doctor is also flying to attend the Moscow conference. 

The price of the family’s trip to Moscow is 120,000 roubles (USD 1,840.80, 1,405.59 Pound sterling). 

Russian supporters of the Krasnoyarsk-based foundation Dobro24 that started the fundraising campaign gathered 25,539 roubles. 

Bank details and link to the foundation’s page for those willing to help Tim and his family within Russia

БФ «ДОБРО24.РУ»

ИНН 2462195051

КПП 246201001

ОГРН 1112400001471

сч. 40703810131000000560

Красноярское отделение №8646 ПАО «Сбербанк» г. Красноярск

к/с 30101810800000000627

БИК 040407627

Comments (1)

I have never heard about this kind of illness, it must be awful for the patient. What makes the bones grow to wrong way? Does anybody know it? All the Doctors and professors in the whole world should think about it and when they all together could find the solution and reason for it.
Leiah Sariell, Lapland Finland
15/05/2019 22:39
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