Hertfordshire family raise vital funds to help daughter
Lexi has been diagnosed with a rare disease
A family in Hertfordshire are raising money to fund vital research to help their daughter Lexi.
After little Lexi was born her parent's noticed her big toes didn't look the same as everyone else's and the movement in her thumbs looked a little odd.
Following X-rays in April they were told she had bunions on her feet and that her thumbs were double jointed.
A few weeks later they were informed Lexi was missing the top bone in each of her big toes and her thumbs were fused. They were then incorrectly told it was possible she had a syndrome meaning she was unlikely to ever walk.
Unhappy with the news Alex and Dave decided to do their own research and came across Fibrodysplasia Ossificans Progressiva.
FOP, is one of the rarest genetic conditions that causes bone to form in muscles and other connective tissues such as tendons and ligaments.
Any minor trauma can make Lexi's condition worse, her mum Alex told us they have to be so careful:
"We don't want to wrap her in cotton wool, but we need to make sure that her body receives as little trauma as possible.
"So we just need to be aware of her condition and make sure that we're smart with what we do with her."
Scientists are working to cure this disease, but research is solely funded by the FOPFriends Charity.
Alex and Dave told us their aim is to raise funds towards vital research and get medicine on the market as quickly as possible to ensure Lexi has it in the early stages of her life.
You can find out more about FOP on the FOPFriends charity website**** and donate to the Crowdfunder here.