I am the mother of a six-year-old boy called Alex who is suffering from facial morphea scleroderma.

He has a large patch on the left side of his face under his chin which is slowly changing the shape of his face and jaw. He also has a patch in his hair above his left ear which has turned his hair white. He has a definite underdeveloped left side of his face which is more apparent when he is asleep.

He is currently on methotrexate weekly and has been in hospital twice for infusions of steroids.

He is a happy little boy who at the moment is not affected by his disease. I am not sure how he will feel when he is older.