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"
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