A mother in Siberia has spoken of the devastating diagnosis that her two-year-old son is turning into a 'living stone statue' due to an incurable condition known as Stone Man syndrome.
Svetlana Pavlenko, 41, from Krasnoyarsk, was told by doctors that her son Timofey has fibrodysplasia ossificans progressiva (FOP), a disease that affects about one in two million people worldwide, with only around 1,000 registered patients.
The condition causes soft tissue to turn into bone, progressively immobilising the body. Timofey's first symptom was curved big toes at birth, which doctors initially dismissed. As he grew, a lump moved from his head to his neck, shoulders and arms, limiting his movement.
Medics in Krasnoyarsk were baffled, and the family travelled 2,600 miles to Moscow for a diagnosis. 'No doctors could explain what was going on, until we heard the blood-chilling diagnosis,' said Svetlana. 'He can't turn his neck, his back became curved and doesn't straighten.'
There is no cure for FOP, and surgery is not an option as it can trigger new bone growth. Svetlana is now fundraising to attend a medical conference in Moscow in July, where she hopes to consult leading experts including US professor Frederick Kaplan, who helped discover the FOP gene, and a top German doctor.
'Little Tim's parents know there is no cure,' reported The Siberian Times. 'What they hope is to meet other families and the world's two leading experts who study Stone Man syndrome.'
