Born on January 31, this year, Lexi, is suffering from an extremely rare and incurable genetic condition that ‘turns her body into stone’ with no movement. The disease is said to affect just one in two million people.
Her parents – Alex and Dave from Hertfordshire, UK, noticed Lexi didn’t look quite normal as she did not have much movement in her thumbs and that her big toes didn’t look quite right.
And that’s when the doctors, after several attempts, diagnosed a rare disease called Fibrodysplasia Ossificans Progressiva (FOP).
The disorder can lead to bone formation outside the skeleton where the body replaces connective tissues, ligaments and muscles, with bone. In time, it results in restricted movement and thus is commonly described as the body turning into stone. Also, people suffering with Fibrodysplasia Ossificans Progressiva can be bedridden by the age of 20 and their life expectancy is just around 40 years.
The parents of the five-month-old are spreading about the rare genetic condition through social media platforms so other families can observe and be aware of such a condition.
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