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‘Turning to stone’: Rare disease detected in a 5-month-old baby

England: A five-month-old baby girl in the UK was diagnosed with a rare genetic disease where her tissues turn into bones. A genetic disorder called Fibrodysplasia Ossificans Progressiva (FOP) gradually replaces muscle tissue and connective tissue, such as tendons and ligaments, with bone; this causes bone formation outside the skeleton, which restricts movement. The body is often compared to turning to stone, as per reports on the media.

Her parents Alex and Dave from Hemel Hempstead were informed of their daughter Lexi Robin’s life-limiting disease. The child was born in January and appeared to be a healthy baby. But soon, they noticed that her big toes didn’t look quite right and that there was little movement in her thumbs, the media reported.

She was later diagnosed with a rare and incurable condition affecting only one in two million people. The parents of the child are now warning other families to watch out for potential signs.

The following are the effects of Fibrodysplasia Ossificans Progressiva:

Lexi’s condition will rapidly deteriorate if even a minor trauma occurs, like falling over.

Traumatic injuries to her body will lead to bumps which can lead to extra bones growing, preventing her from moving.

As a result of her condition, she cannot have injections, vaccinations, or dental work, and she will also not be able to have children.

There is no cure for the condition, and the scientists working on the cure are solely funded by the FOPFriends Charity, which receives no government funding. Parents have taken to social media to share her story and have received more than £31,000 in donations in just three days.


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