From Lydia’s Mother

Lydia was born, apparently healthy, a normal pregnancy. She was born with a floppy larynx and at 6 months, it didn’t seem to be better, so we visited our GP. We were referred to or local hospital with concerns of how she was sitting. Our appointment was January 09. It quickly became serious. The doctors had no idea what the problem was. After many scans, X-rays and blood tests, we were given her diagnosis. That was April 09. She quickly regressed and the symptoms became worse. There were no families for us to speak to who had experienced GM1. We were on our own. Our consultant was amazing, she too had never seen a child with GM1. We were given the best care we could have asked for. We lost our beautiful girl on 4th August 09.
I have since registered on the find a family website in the UK and was approached by a family who’s daughter had been diagnosed with GM1. We remain firm friends and support each other.