Over 100,000 people sign petition for eight-month-old baby girl
Lexi is in a race against time to find treatments for ultra-rare disease
Eight-month-old Lexi Robbins from Hertfordshire has been diagnosed with Fibrodysplasia Ossificans Progressiva (FOP).
The ultra-rare disease causes the body's bone to develop where it normally wouldn't.
The odds of having the disease are one in two million and it can render the carrier paralysed. Currently, there are 80 known cases in the UK and 900 worldwide.
Lexi's parents, Alex and David started a petition at the end of September wanting funding to be granted to fund research into FOP.
There are three people in Oxford working to find a cure.
However, they are being privately funded by parents and sufferers of the disease at a cost of £125,000 a year.
If the petition reaches the amount required then it will be considered for debate in Parliament.
Speaking to Greatest Hits, Alex said:
"Just because this is rare it doesn't mean to say that they get swept under the carpet and that's that.
"This is what we are fighting for.
"We aren't just fighting for Lexi, we're fighting for people to be allocated funding and research and help."
Time is of the essence for those suffering from FOP, a simple trip to the dentist could lock Lexi's jaw open for the rest of her life.
Dad David spoke on the importance of research:
"If we can do something for our daughter where we can look her in the eyes in a few years time and say look, this is the situation.
"This is what we're living with, but this is your option going forward.
"That's where we want to get to."
He added:
"We want to do it for the parents and families before us, but also those who come after us.
"That keeps us going."
To find out more about the petition click here