Hi there, my name is Erike Walthaus, from the Netherlands. Since the 29th of June 2016 we now finally know, after 33 years, that my sister Judith Walthaus is diagnosed with Aicardi Goutieres, type 7. With this new information, we are just beginning to understand that she might be one of the oldest patients in the world. With this diagnose we now see a destine pattern in symptoms she's suffering from.
As a child, Judith spoke some words, however, the last years she's hardly speaking anymore. Also, she's getting more spastic and where she was a child with character, laughter and a bit rebellion behavior (like deliberately bumping into people with her wheelchair to make them spook), now as an adult she seems more and more silent and lack of emotion.
Judith never walked, never spoke sentences, just some words, she uses pictograms on the table of her wheelchair to point out what she wants (like pictos of food/drinks or places to go to, family, "work", or different singers/artists to see on television). Also; this behavior diminished over the years. She hardly points out anymore.
Doctors believe that her eyesight has deteriorated over time causing her to see bad. Overall we are seeing her getting less and less interactive over the years. My mother still takes care of Judith. She lives at home, with my parents and usually goes to what we in the Netherlands call "Day care", where she's in a group of people with different degrees of handicaps. She looks at the television, sits and watches around the room all day long. Every afternoon she comes home, where my mother takes care of her the rest of the day and night. With my mother getting older too (she's 60 years right now), we are wondering what we can expect.