The story of the baby whose body “turns to stone” – Diversity

Alex and Dave Robins, Lexi’s parents detected that she had small bumps on the big toes of her feet, began to investigate, to see specialists and after performing a genetic test, they confirmed the diagnosis of FOP. .

The Progressive ossifying fibrodysplasia affects one in two people worldwide. And it is characterized by the gradual replacement of muscles and connective tissues, such as tendons and ligaments, with bones.

In addition, bone can also form outside the skeleton, restricting movement and that is why many to describe its characteristics emphasize that “the body turns into stone”.

Their parents explained on the platform crowfunder.co.uk that if Lexi suffers from a minor trauma, such as a fall, her condition will worsen more quickly.

According to FOP Argentina Foundation, “when the joints are affected, they are progressively immobilized leading to an increasing handicap which leads people with the disease to need help to carry out the smallest daily activities”.

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“You cannot have injections, dental treatment or trauma because it will cause lumps, which will lead to additional bone growth,” they said.

You are also at risk for hearing loss as you age, although FOP develops differently in everyone.

“We are under the supervision of a leading pediatrician in the UK and he said in his 30 year career he had never seen a case like this, at what point it’s rare, “said Dave his father in an interview with The mirror.

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Marriage Membership Page Friends of the FOP, a support group seeking funding to find a cure or treatment.

“Hay una gran comunidad de otros padres que tienen hijos con FOP, de hecho, uno de ellos fue quien creó la organización benéfica llamada FOPFriends, y todo lo que hacen lo donan a la investigation de la enfermedad”, explained Alex, the mamá de the little.

Regarding their progress on the FOP Argentina page, they explain that “Has a high degree of interpersonal variabilityl “. However, in general,” by the end of the second decade of life, those affected usually already exhibit a high degree of progress, which in addition to affecting their autonomy and mobility, can lead to additional complications in the functioning of other systems, such as, the respiratory, the nervous, the circulatory, the food “.