One mum is warning parents about the rare disease FOP after her 4-month-old daughter Lexi was diagnosed with the illness.
Alexandra Robins took to Instagram to urge other parents to check their kid’s toes for signs of the incurable disease.
She opened up about her daughter’s diagnosis in an emotional video on Instagram, “We’ve had the most heartbreaking week. We found out that Lexi has been diagnosed with something called FOP, which is an extremely, extremely rare disease.”
The mum explained that there is no cause for FOP other than a gene mutation. “When Lexi was born her big toes were right angles. To cut an extremely long story short, we ended up with a diagnosis of FOP.”
Alexandra shared that medical experts are working on a cure, but it could take five years before any major progress is made. Funding is desperately needed, but they are hopeful about finding a cure.
Fibrodysplasia ossificans progressiva is a rare disease where the system breaks down. The body’s soft tissues, muscles, ligaments, and tendons — turn into bone and form a second skeleton outside your normal one.
Alexandra revealed that people with FOP are at risk of becoming fully paralyzed, blind and it is currently classed as an incurable disease.
The mum called on the public to help support life-saving treatment for Lexi and others affected by FOP.
“The quicker we can raise money, the quicker we can save Lexi’s life and stop her from becoming paralyzed.”
She pleaded, “Please go and check your children’s toes, your baby’s toes. If you’ve had these lumps come up, please take your children to the GP and have everything checked.
“Please go give your children a hug because you have no idea how long you have.”
FOP treatment is not funded, but you can support Alexandra and Lexi here.
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