Hope was born at 27 weeks and weighed 2lb 1oz; her birth mother was a heroin user. In her first year which was spent in hospital she fought hard to survive.
She came to me aged 2 and in the ensuing 12 years she has had numerous surgeries - gastrostomy, 3 throat surgeries, surgery to remove salivary glands, fundoplication. She has had a baclofen pump fitted (and replaced); her left hip has been operated on twice and she has had an extensive spinal fusion with pelvic pinning. Her recovery has not always been easy and she has traveled a rocky road. She has also been very ill with chest infections and more than once I have wondered if she would survive.
Today she is 14 years old, totally dependent with no speech, very little functional movement but she does have a big personality and a zest for life.