I am glad to see you taking an interest in your sisters well being. Can you please tell me what treatment she is getting now. Treatment even if treated late is extremely imprortant. I dont know what things are like in South Africa but I know things are not the best when it comes to treatment in France as my mom is french. Anyway dont know how much help I can be but if I can help I will. Treatment and meds (PKU meds not typical meds) are the key.