6-year-old girl faces illness

A 6-year-old girl living in Bellevue (Ohio, USA) is trying to cope with an extremely rare disease that has the potential to turn her into a 'living statue'.

The McKean family (living in Ohio, USA) is looking for ways to help their daughter Ali McKean fight against extremely rare diseases of muscles and bones, making her body stiff and unable to move. or move, similar to a statue.

The disease will progress faster as the little Ali moves. Over time, with her illness, Ali McKean will not be able to move or perform any small movements except her mouth.

Baby Ali with her parents

The disease that Ali McKean had had was called FOP (Fibrodysplasia ossificans progressiva), or the petrified witness and there was no way to cure it. Only 750 people worldwide are diagnosed with this disease.

'Ali is gradually becoming frozen and one day, her body will "freeze" completely, " said her mother, Angela. 'The more you move, the more painful Ali will be.'

With her illness, Ali must be taught at home to prevent further illness when she is overly active at school.

Despite moving hard, little Ali still enjoys outdoor activities with his family

Little Ali walked with his sister

'It is difficult to decide whether to allow her to do what she wants because this will make the disease happen faster. We always ask ourselves whether she hates us or not because she always prohibits doing what she wants when she can still move , 'Angela added.

However, Angela and her husband, Gabe, said her 6-year-old daughter showed a courage and determination to deal with the disease in an amazing way.

Baby Ali swims with her mother, Angela

'We are amazed by the strength, courage and attitude about Ali's life when he was only 6 years old, even with what he was going through. Tears have fallen a lot, but we still know how to share our happy days together , 'Angela added.

Although she could not move strongly, but Ali still enjoyed outdoor activities or swimming with her family, of course there was always careful supervision of those around her.

The McKean family hopes that medical progress will help cure her illness

Every day, Ali's parents still have to check their child's condition to make sure they can still move their limbs. Now her parents still believe in a science day that can find a cure for her daughter's illness.