By . Mark Duell . PUBLISHED: . 10:24 EST, 28 April 2013 . | . UPDATED: . 10:24 EST, 28 April 2013 . A family is facing a battle to save their six-year-old daughter before she turns into a human statue. Ali McKean, of Bellevue, Ohio, suffers from a very rare condition which means simple bumps and knocks are fusing her muscles into bone. The girl is growing an additional skeleton next to her own as a result, and it will one day fuse her solid - leaving her only able to move her lips. Stone Man Syndrome: Ali McKean (left, and right with her brother Michael, 14), of Bellevue, Ohio, suffers from a very rare condition which means simple bumps and knocks are fusing her muscles into bone . Together: Gabe and Angela McKean are pictured with their six-year-old daughter Ali and the family dog, Gaeia . Only 750 people in the world have been diagnosed with the illness - called fibrodysplasia ossificans progressiva (FOP) or Stone Man Syndrome - and there is no cure. Speaking from their home, Ali’s mother Angela said: ‘Ali is freezing, her body is distorting and one day she will seize up completely. The more knocks and falls she has the more swellings and fusions. ‘It's hard to decide whether to let her do everything she wants now and let the disorder possibly progress faster. We ask ourselves if she will hate us when she's older because we didn't let her do all that she could when she was still mobile.’ Ali suffers from agonising pain in her legs and as bone growth continues to spread she has begun to lost movement. Condition developing: The schoolgirl is growing an additional skeleton next to her own, and it will one day fuse her solid - leaving her only able to move her lips . Siblings: Ali and her 15-year-old sister Lexus Lucio (right) attend a local fundraising event in Bellevue, Ohio . And she is now home-schooled in order to isolate her from common illnesses, which can accelerate her condition. 'It's hard to decide whether to let her do everything she wants now and let the disorder possibly progress faster' Angela McKean, Ali's mother . But Angela and her husband Gabe, who have two other children, Lexus, 15, and Michael, 14, said their daughter has shown incredible courage. Mrs McKean explained: ‘The last 16 months have been very trying for our whole family, but together we have stayed strong. ‘We are still in awe of Ali's strength, courage, and attitude on life at the young age of six years - even with all she is going through. Some days are better than others, just as some are worse. Team: The McKean family, dressed in their Ali's Army T-Shirts, attend an Akron Racers softball game in Ohio . Swimming: Ali (pictured with her mother) she is home-schooled in order to isolate her from common illnesses . ‘But somehow we manage. A lot of tears have been shed - but we have shared many days full of laughter as well. 'We still wake up every morning and have Ali "tickle the sky" to check her range of motion in her shoulders' Angela McKean, Ali's mother . ‘There have been days where Ali cries for hours in pain and there is nothing we can do but hold her and try not to cry too.’ She added: ‘We still wake up every morning and have Ali “tickle the sky” to check her range of motion in her shoulders - holding our breath that she can still lift her arms. ‘While watching what FOP is doing to our baby is exhausting and heart wrenching, being Ali's parents is amazing - and is an incredible blessing.’
Ali McKean, of Bellevue, Ohio, growing an additional skeleton next to own .
One of 750 people globally with condition known as Stone Man Syndrome .
Girl, 6, will one day be fused solid - leaving her only able to move her lips .
By . Mark Duell . PUBLISHED: . 10:24 EST, 28 April 2013 . | . UPDATED: . 10:24 EST, 28 April 2013 . A family is facing a battle to save their six-year-old daughter before she turns into a human statue. Ali McKean, of Bellevue, Ohio, suffers from a very rare condition which means simple bumps and knocks are fusing her muscles into bone. The girl is growing an additional skeleton next to her own as a result, and it will one day fuse her solid - leaving her only able to move her lips. Stone Man Syndrome: Ali McKean (left, and right with her brother Michael, 14), of Bellevue, Ohio, suffers from a very rare condition which means simple bumps and knocks are fusing her muscles into bone . Together: Gabe and Angela McKean are pictured with their six-year-old daughter Ali and the family dog, Gaeia . Only 750 people in the world have been diagnosed with the illness - called fibrodysplasia ossificans progressiva (FOP) or Stone Man Syndrome - and there is no cure. Speaking from their home, Ali’s mother Angela said: ‘Ali is freezing, her body is distorting and one day she will seize up completely. The more knocks and falls she has the more swellings and fusions. ‘It's hard to decide whether to let her do everything she wants now and let the disorder possibly progress faster. We ask ourselves if she will hate us when she's older because we didn't let her do all that she could when she was still mobile.’ Ali suffers from agonising pain in her legs and as bone growth continues to spread she has begun to lost movement. Condition developing: The schoolgirl is growing an additional skeleton next to her own, and it will one day fuse her solid - leaving her only able to move her lips . Siblings: Ali and her 15-year-old sister Lexus Lucio (right) attend a local fundraising event in Bellevue, Ohio . And she is now home-schooled in order to isolate her from common illnesses, which can accelerate her condition. 'It's hard to decide whether to let her do everything she wants now and let the disorder possibly progress faster' Angela McKean, Ali's mother . But Angela and her husband Gabe, who have two other children, Lexus, 15, and Michael, 14, said their daughter has shown incredible courage. Mrs McKean explained: ‘The last 16 months have been very trying for our whole family, but together we have stayed strong. ‘We are still in awe of Ali's strength, courage, and attitude on life at the young age of six years - even with all she is going through. Some days are better than others, just as some are worse. Team: The McKean family, dressed in their Ali's Army T-Shirts, attend an Akron Racers softball game in Ohio . Swimming: Ali (pictured with her mother) she is home-schooled in order to isolate her from common illnesses . ‘But somehow we manage. A lot of tears have been shed - but we have shared many days full of laughter as well. 'We still wake up every morning and have Ali "tickle the sky" to check her range of motion in her shoulders' Angela McKean, Ali's mother . ‘There have been days where Ali cries for hours in pain and there is nothing we can do but hold her and try not to cry too.’ She added: ‘We still wake up every morning and have Ali “tickle the sky” to check her range of motion in her shoulders - holding our breath that she can still lift her arms. ‘While watching what FOP is doing to our baby is exhausting and heart wrenching, being Ali's parents is amazing - and is an incredible blessing.’
human statue. Ali McKean, of Bellevue, Ohio, one day fuse her solid - leaving her only able to move her lips. Stone Man Syndrome: Ali McKean growing an additional skeleton next to her own, and it will one day fuse her solid - leaving her