In preparation for Lexi taking her first steps, Alex and her husband David, 39, a sales manager, have covered every sharp corner or ledge in their home with padding to cushion future bumps. ‘It’s a fine balance between allowing Lexi to develop normally and keeping her safe. He’s a boisterous three-year-old - but he doesn’t have FOP and accidents happen.
‘She’s a happy, sassy little girl who always wants to copy her older brother Ronnie. ‘We’ll always be on edge, with eyes in the back of our heads. ‘We are very anxious about Lexi becoming mobile,’ says Alex, 30, an events manager. Most FOP patients die prematurely, in their 40s and 50s.
Others find the extra bone growth around their ribcage restricts their breathing, making them prone to infections. Thought to be one of the rarest and most disabling conditions known to medicine, fibrodysplasia ossificans progressiva (FOP) causes a lattice of bone to grow throughout the body, gradually paralysing the person, joint by jointĪround one in three develops partial or full hearing loss because of the fusion of bones in their ears.