Alex and Dave Robins welcomed their baby girl, Lexi, last January. But barely five months after the birth of this one, the doctors announce the worst to the young parents. Lexi has progressive ossifying fibrodysplasia (PFO), a rare, incurable disease that affects one in two million people. So since the announcement, which took place in July, Alex and Dave have been fighting to advance research and, who knows, to be able to see their daughter grow old by their side.
Little Lexi, who has not yet blown out her first candle, is therefore suffering from “the stone man’s disease”. As Yahoo News explains, this condition over time transforms muscles, tendons and ligaments into bone. The movements then become impossible to perform. For now, little Lexi is still valid but remains nevertheless very fragile. A simple fall would cause additional bone growth, which could make her case worse. It is also impossible for her to receive dental care or vaccines, or to conceive children. Results ? The life expectancy of patients with this disease is 40 years. And no treatment exists to date to cure it.
Lexi’s parents determined to advance the research
Alex and Dave Robins are not going to let themselves down. They have already collected 120,000 pounds to finance the work of an Oxford laboratory. The young parents have also launched a petition to have the subject of research funding debated by parliamentarians. More than 100,000 signatures have already been collected. Their dream? That a drug be quickly brought to market to extend Lexi’s life as long as possible. In the meantime, he is making the most of their little girl. “She sleeps all night, she goes out and laughs constantly, hardly ever cries. That’s how we want to keep her,” her mom said.
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