Teresia Paape
My 8 year old son has Waardenburg Syndrome. He is profoundly deaf in his left ear and has a progressive hearing loss in his right ear. He has lost all hearing of the low tones in his "good" ear. We are going through sign language classes as well as him taking lip reading courses. He was born 6 weeks early with double pneumonia. He inherited this disorder from his father, who inherited it from his mother and her father. My sons half brother also has WS. He has two different color eyes and is profound deaf in his right ear. My sons father is profound deaf in his left ear and was totally grey when he was 15. Neither my sons half brother or his father have the progressive hearing loss like my son. I have done a lot of research on WS, but there just isn't any info on it out there. My greatest concern is lifespan. As my sons paternal grandmother died at 50 and her father died at 48. I would appreciate any info or support groups on WS.