Laura was six years old when we first began to think that there might be a problem with her eyesight. She had started to hold her reading books closer to her eyes and was creeping closer to the television. I remember feeling quite upset, thinking that my perfect little girl might need reading glasses. I had no idea what was about to unfold.”

“After a series of medical appointments Laura was misdiagnosed as having a macular dystrophy. This condition purely affects eyesight. It was expected that she would remain partially sighted for decades. By the age of 7 she was completely blind. We were just getting used to blindness when after three years of living with this misdiagnosis, we were given the devastating news that she has Batten Disease. I cannot in such a short letter give an adequate description of how this constant & unrelenting loss of abilities affects everyday life. All I want to do is care for my child, but her needs are constantly changing and she gets more and more dependent. It is absolutely heartbreaking and completely exhausting. I read a quote recently which is this “When a parent dies, you lose your past. When a child dies you are robbed of your future.” I try very hard not to think about the future. The medics have told me what to expect yet I continue to hope that it won’t happen. Thankfully we were not completely alone after receiving Laura’s terrible diagnosis. Within minutes of receiving this devastating news we were handed a Batten Disease Family Association information leaflet about the disease. A major part of the BDFA’s work is in offering emotion support to families. It is hugely valuable to meet with other affected families at BDFA organized family days. This is often the only time you are able to talk and share with people who really understand.”