Grace was born on the 2/4/08, she was 3weeks and 5 days early. When she was born we were taken to the ward but she didn't feed extremely well. We were allowed to take her home as long as she would take 10mls every 4 hours. On discharge from the hospital a scan was arranged for 2 days later, the scan was inconclusive and a ct scan was arranged. The day after the scan we had a call from the consultant asking to meet with us after his clinic the following day. It was at this point Grace was diagnosed with Lissencephaly. We were told an appointment had been arranged for us to meet the neurologist. We were advised that Grace is worst case scenario and she will never physically or mentally develop past 3-6 months. Her time with us is precious and most likely wouldn't make her second birthday.
Grace is now 6 years old. She smiles beautifully and communicates with us in her own way. We are totally thankful for the joy she brings to our lives. Over the last 6 years she has had numerous hospital stays for chest infection/pneumonia, refux, etc and undergone surgeries to give her a better quality of life, including earlier this year for complete stomach disconnection.
Grace is our little princess and continues to amaze us.