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Lexi Robins is barely five months old, and like all babies, she is beautiful and always smiling and playful. But her body, as she will one day discover, left him.
Lexi suffers from a very rare, incurable disease which “turn your body to stone“slowly. This is a condition that affects one in two million people and is called Progressive ossifying fibrodysplasia (PFO).
Concretely, according to specialists, the genetic disease gradually replaces muscles and connective tissue, like tendons and ligaments, through bones.
The rare disease was discovered after the baby’s parents noticed that had trouble moving his fingers, both hands and feet, where there is also a deformation of their big toes.
That’s why, in April, they took Lexi to the doctor and gave her x-rays that suggested she had bunions on her feet and that his thumbs were double-jointed, according to what he reports HertsLive.
The baby has a very rare disease that causes his body to “gradually turn into bone”.
“Initially, we were told, after the x-rays, that probably Lexi had a very rare syndrome and was not working“said the baby’s mother, Alex who is from Hemel Hempstead, England, like the whole family.
The mother, who is 26, added that at first they didn’t believe what the doctors told them because “she is very strong physically at the moment and is moving her legs in a normal way,” he said.
“We weren’t very sure, so we looked for other opinions,” he added. Thus, after consulting specialists, the parents of Lexi decided to do a genetic test and other studies.
“Towards the end of May we do the genetic test and more x-raysBut the genetic test takes six weeks to get the results. We were very agitated and anxious, ”he said.
Lexi and her parents and her brother. The disease he suffers from has no cure or cure.
Lexi’s tests were sent to a laboratory specializing in Los Angeles United States, where they confirmed the worst news, that the baby is indeed suffering from FOP.
“We are under the supervision of a leading British pediatrician,” said Dave, Lexi’s father. “He told us that in his 30-year career he had never seen a case like thisThat’s how weird, “the 38-year-old added.
FOP can cause bone formation outside the skeleton which restricts movement and often it is compared to the body which turns to stone.
Parents noted that the baby did not have good mobility in the fingers.
This means that if Lexi’s body suffers even a minor trauma, something as simple as a fall, your condition could get worse quickly. “Any trauma to his body will subsequently cause protuberances which will cause additional bone growth, which will prevent him from moving, ”he explains.
During this time, the disease also prevents the baby from receiving injections, vaccines or dental care, and neither will he be able to have children.
Alex and Dave, who are also parents of three-year-old Ronnie, discovered through their own research that there is a 50 percent chance that she will become deaf as extra bone grows in your body and neck.
Lexi suffers from a disease that affects 1 in 2 million births.
“She’s absolutely awesome. She sleeps all night, constantly smiles and laughs, hardly ever cries. This is how we want to keep it“said the mother.
Again it is not known what causes the condition, and the scientists working on the remedy are funded solely by FOPFriends Charity, a charity that does not receive official funding.
“It’s heartbreaking and a roller coaster of emotions. When they tell you there is no cure your heart sinks“Dave closed.
Source: DailyStar
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