From Allison’s Mother

Our sweet Allison Layne was born May 22, 1985 in Tyler, TX. She was diagnosed the summer of 1985 when she failed to progress and meet any milestones in her development, and developed heart failure and repeated bouts of pneumonia. She was finally diagnosed by a team of doctors at Children’s Medical Center in Dallas, TX. Allison was in and out of Children’s during her short life, and passed away November 6, 1985. She was our second child, and there was no history of this disease in either of our families that we were aware of. In 1985, with no internet or home computer, we felt very alone. I’m so glad that today families have a way to find and support each other. We have never met another family that has dealt with GM-1 Gangliosidosis in all these years. I’m glad to find your website. Thanks for giving me a place to tell our story!

Our daughter, Allison Layne Schwab, was born May 22, 1985. Although apparently healthy at birth, she began having serious health issues and after lengthy stays at Children’s Medical Center in Dallas, TX, she was finally diagnosed with GM1 Gangliosidosis in the summer of 1985. She passed away November 6, 1985 of heart failure and pneumonia. We already had a son who did not have the disease, and no other history of this in either one of our families, so it was a surprise, and of course, we had never heard of the illness. With no internet or home computer in 1985, we were alone. No other families at that time could be found by our doctor who were going through the same thing with a child. It was a lonely time. I am so glad that today families have a way to find and support each other.