Mum fears son, 2, becoming ‘stone statue’ as rare disease twists his body

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Mum begs for help as ultra-rare disease slowly twists two-year-old son's body in a knot

Timofey can't raise or bend his arms or turn his neck, while his back has become curved, like in this file photo

The condition leads to sufferers being bedridden by the age of 20, while life expectancy is around 40. “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.“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.”Local medics were bemused about his condition and sent him 2,600 miles away to Moscow.Svetlana said: “No doctors could explain what was going on, until we travelled to Moscow where we heard the blood-chilling diagnosis of fibrodysplasia.

People with the condition are often born with malformed big toes, short thumbs or other skeletal abnormalities.Some drugs have been used to reduce pain and swelling.Biopsies and invasive tests are not recommended due to the trauma they cause muscles.However, the determined mother is now raising funds to travel back to Moscow where a medical conference will be attended by the world’s leading doctors in this field.

 

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