Hertfordshire baby with condition that 'turns body to stone' celebrates first birthday

A baby with a rare genetic condition that replaces tissues and tendons with extra skeletal bone celebrated her first birthday this week after a difficult year.

Lexi Robins, from Hemel Hempstead, was diagnosed at just five months old with one of the most degenerative diseases, known as Fibrodysplasia Ossificans Progressiva, or FOP.

The condition means Lexi has to take great care in day-to-day life as any trauma to her body could cause bumps which lead to extra bone growing.

Medics believe there is a chance she may become deaf as extra bone develops through her body and up her neck.

Lexi's parents, Alex, 30, and Dave, 39, are determined to help their daughter and have raised over £100,000 for charity and campaigned for better treatment with the hope of one day finding a cure.

"It’s that hard balancing act between me wanting to encourage her and her developing and reaching her milestones, versus trying to protect her, keeping her safe and not wanting her to move too quickly," said Alex.

"She's very gung-ho at the minute, she gets in her walker and wants to go. When she's in her walker that's great, she's protected, but when she's out of the walker and trying to walk it's different, we need to make sure we're there."Every day is a balancing act," Alex added.

Most people with FOP are immobile by the age of 30, according to research, as once the bone has developed and movement is lost, there is currently no way to reverse it.

Alex said there had been plenty of ups and downs during Lexi's life but the family had received the support of friends and complete strangers.

"I think the support around you is so important," said Alex.

"And when you're having a really bad day, I have special friends I can ring up and they give me a good old harsh talking to.

"And Dave is going through exactly the same. It's been a tough one," Alex added.

Alex helped launch a petition to secure a parliamentary debate into better funding. Treatment is not currently available on the NHS and costs around £125,000 a year.

If researchers help find a cure for FOP it could help increase knowledge of more common and related conditions, such as rare cancer treatments, osteoporosis and hip replacements.

This spring it's hoped there will be a full three-hour debate on FOP in Parliament.