Hemel family appeal for land to help build a house for baby girl with rare disease that is turning her body 'to stone'

Lexi Robins has an incurable condition which turns her body ‘to stone’.

By Olivia Preston
Friday, 22nd April 2022, 2:49 pm
Updated Tuesday, 26th April 2022, 9:07 am

The family of a Hemel Hempstead tot who was diagnosed rare disease is appealing for help to find land suitable for a specialist bungalow for the little girl.

One-year-old Lexi Robins from Hemel Hempstead has Fibrodysplasia Ossificans Progressiva, a disease that turns her body ‘to stone’ and needs a wheelchair-friendly home.

And doctors have said it is ‘crucial’ that she lives in a safe environment.

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Lexi Robins from Hemel Hempstead has a rare condition.

Her parents, Alex and Dave Robins have sold their house and are living with Alex’s mum as they wait to find a suitable property to renovate – or a plot of land to build the bungalow.

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Mum Alex says that they hope to work with their occupational therapist to “create a risk-free safe environment for her to live and play, protecting her to the best of their ability – improving her quality and hopefully life expectancy”.

She is asking for anyone who has any suitable non-Green Belt land to help, as the family needs somewhere local to build on.

Alex and Dave with their daughter, Lexi.

The couple, who also have a son called Ronnie, says that Lexi’s condition is dependent on how protected she is in her day-to-day life and any knock to her muscles could cause her body to seize up at any moment.

Alex said: “We’ve got doctors’ reports saying that it's crucial that she's kept safe and she needs to live in a safe environment.”

Lexi’s disease gradually replaces muscle and connective tissue, like tendons and ligaments, with bone.

Only one in 1 million people worldwide suffer from the condition.