A five-month-old baby girl’s parents were left feeling distraught after they found out their beautiful daughter was diagnosed with a rare and incurable condition.
Lexi Robins was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), a disease which many say tends to ‘turn a body into stone’.
FOP is a rare disease which affects one in two million people and gradually replaces muscle and connective tissue with bone.
Lexi cannot have any injections, dental work or children and any trauma to her body will cause bumps which lead to extra bone growing and preventing her from moving.
Alex and Dave (Lexi’s parents) are now trying to raise awareness and funds to help a research team in Oxford to work on a cure.
Mum Alex said on her fundraising page: “The day after little Lexi was born (on January 31) we noticed her big toes did not look the same as everyone else’s and in addition the movement in her thumbs looked a little odd.
“In April 2021, after x-rays we were told she had bunions on her feet and that her thumbs were double jointed.
“A few weeks later we were informed Lexi was missing the top bone in each of her big toes and her thumbs were fused. At this point we were incorrectly told that it was possible she had a syndrome, and it was unlikely Lexi would ever walk.
“We have spoken to experts and learnt that there are active clinical trials which are currently very successful.
“Our aim is to help raise funds to get this medicine on the market quickly and ensure Lexi can receive it in the early stages of her life to help prolong her time here with us.”
Speaking to HemelNews, Alex said finding out about Lexi’s conditions left her and Dave feeling very upset.
The Hemel Hempstead community is helping the family raise vital funds.
Alex added: “Thank you to all who are supporting us. We wouldn’t be able to do this without you. Hemel is really pulling together to help us, and we do really appreciate that.
“If you do have any events coming up, we would really appreciate if you chose Lexi as a charity to sponsor.”
To donate and find out more go to crowdfunder.co.uk/finding-a-cure-for-our-little-lexi
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