When Lexi Robins was delivered on January 2021, she appeared to her parents to be a healthy and happy kid, but physicians have revealed that she has an incurable hereditary disease that causes tissue to convert to bone. The parents of a baby girl who was born with a rare genetic disorder that will cause her tissue to convert to bone are pushing other families to be on the lookout for symptoms of the sickness.
Lexi Robins, who was born in January 2021, appeared to her parents to be a healthy and happy child, but she has now been diagnosed with a rare and unfortunately incurable condition that affects only one in every two million people. Alex and Dave have been told that their daughter has Fibrodysplasia Ossificans Progressiva (FOP), a life-threatening illness, according to The Mirror. Muscle tissue in the body, such as tendons and ligaments, is gradually replaced by bone as a result of the hereditary condition.
It can cause bone to develop outside of the skeleton, limiting movement and being compared to the body turning to stone. It's exceedingly uncommon, and her parents are now working to raise awareness about it. Alex and Dave discovered Lexi's big toes weren't quite right and her thumbs had limited mobility shortly after she was born on January 31.
Because FOP is so uncommon, it took doctors a long time to diagnose her, and it's hoped that through raising awareness, health professionals and parents would be able to recognize it sooner. Lexi had bunions on her feet and her thumbs were double jointed, according to X-rays taken in April. "After the X-rays, we were informed she possibly had a condition and wouldn't walk," Alex, 29, explained.
"We couldn't believe it because she's so physically strong right now and all she's doing is kicking her legs." The ACR1 gene is the one they're looking for, and unfortunately, that's the one she has.” FOP means that even a slight stress to Lexi's body, like as falling over, will cause her condition to swiftly deteriorate. She won't be able to get injections, immunizations, or dental work because of her condition, and she won't be able to have children.
Any harm to her body will result in bumps, that will lead to the formation of additional bone, limiting her from moving. "We're under the care of a top paediatrician in the UK," Dave, 38, explained, "and he stated he's never seen a case like this in his 30-year career, that's how rare it is." Alex and Dave, who also have a three-year-old daughter named Ronnie, discovered via their own study that there's a 50% possibility she'll go deaf as the extra bone grows through her body and up her neck.
Alex said, "She's simply brilliant." “It was almost impossible for you to write it. She sleeps all night, smiles and laughs all the time, and rarely cries. That's how we'd like to keep her.” The source of the ailment is unknown, and scientists working on a solution are sponsored entirely by the FOPFriends Charity, which receives no support from the NHS.
They've been floored after receiving almost £31,000 in donations in just three days, as well as half a million views on their fundraising page since June 27, as they try to get the drug on the market as soon as possible to prolong Lexi's life. "It means everything," Alex said, adding that he has set a £100,000 fundraising goal. "We've had almost national interest in terms of people messaging and wanting to do stuff all over the country."
"Thank you so much for your help. We still have a long way to go, but as long as it helps raise awareness and funding for research, we'll keep going. We are grateful to everyone and wish to express our gratitude. Without the NHS supporting the study, it is now up to us to raise the monies necessary to save our little girl's life, as well as the lives of all other current and future generations who will be diagnosed with the disease."What are your thoughts on this? What do you think should be done? Please follow my news page for more interesting articles
