Ella is a beautiful girl and much wanted first child of myself Claire and husband David.
Ella was born one week early in 2003 at Winchester Hospital and nothing was picked up until we were due to be discharged.
Ella had not cried at all since birth and was quite floppy. She was transferred to SCBU, where she stayed for 4 weeks.
We brought her home knowing that she was brain damaged and possibly blind, but we didnâ€™t know how or why.
We were then given the devastating diagnosis in September 2003 that Ella had a very rare genetic disorder called NKH and that she wouldnâ€™t live to 5 years and certainly not into double figures.
I am now proud to say, that Ella has exceeded all expectations and has just seen her 16th birthday.
She is severely disabled and is due spinal surgery in August this year.
She is a very brave, very strong girl and we are immensely proud of her.
She does spend a lot of time on her bed, where sheâ€™s most comfortable, so a quilt personal to her will be much loved and much appreciated.
Thank you for reading. X