Hello I am Sao Piteira and we are from Portugal.  I am the Leonor’s mother who is 10 years old.  She developed very well in early childhood and as an infant.  It was not until age 7 that she began to sit and move differently on the floor.  She  fell a lot.  We thought it might be some sort of inner ear issue.  At 8 years old, she began to stutter and speak badly.  We went to doctors.  We did tests until the neuro-pediatrician asked for genetic tests.  By age 9, we knew the diagnosis. It was as though a bomb went off.  Leonor is a happy child.  She attends a regular school, but with special education.  She has many difficulties, but we try to stimulate her so that she will not lose her capabilities.  She does swimming, hippotherapy, speech therapy and physiotherapy since she has scoliosis. I feel so anxious waiting for possible treatments for her  because she is regressing.   She is my life and my princess. Thank you all for your support.