Mother's funding plea for daughter's rare disease
A mother of a one-year-old girl with an illness that turns muscle into bone has urged the government to do more to help research into rare conditions.Her mother Alex Robins said despite government promises no research funding into the condition had materialised.Image source,Mrs Robins said when Lexi was born in January 2021, she had a routine pregnancy and everything was fine.
"Not only has your kid got FOP," she said, "but you have to raise money to try and find a cure for it - there's nothing on the NHS." The aim of the new home, they said, was to "keep her as safe as possible, under our care, to help prolong the quality and extent of her life". "We need to keep the pressure on," he said. "I will continue to push ministers to push the scientists that will make the decision on funding."Alex Robins said the family does all it can to make sure Lexi stays "as safe as possible"
United Kingdom Latest News, United Kingdom Headlines
Similar News:You can also read news stories similar to this one that we have collected from other news sources.
Revolutions in Infectious Disease TestingInfectious diseases still take 14 million lives worldwide each year, making up a quarter of total deaths. This makes them a leading cause of mortality. Read more about the revolutions in their diagnosis here.
Read more »
Nicole Kidman turns heads with quirky fashion choice during Paris Fashion WeekNicole Kidman took to Instagram to reveal a surprising transformation during a rare public appearance
Read more »
Lost Doctor Who movie details unveiled decades laterLost Doctor Who movie details revealed decades later
Read more »
My dad walked out on my mum when I was a baby - so I call him a sperm donor''a man who donates his sperm in order to help a woman get pregnant.'’ 'To me, this sums up perfectly my biological father. He’s a man who gave his sperm to multiple women, resulting in seven children – that I know of.' | ✍️ Anonymous
Read more »