A lot of people will think Hope is called Hope because of how she is. Truth is, she was named Hope from her conception, as she followed a big brother who died on Xmas day 2007 of CDH. So when a scan looking for the same condition revealed different abnormalities, and a follow up inutero MRI revealed ‘Catastrophic brain damage’ and we were advised to not continue with the pregnancy, it was never an option.
Apart from being tiny, we had a few blissful weeks, but then the seizures came and she lost her personality and sight. She developed, but very slowly, then would regress, she would get poorly often and spend lots of time in hospital. We didn’t get the diagnosis of PDHD/PDCD until she was 3. It was devastating but has also been positive. We have had fantastic results from the ketogenic diet, both developmentally and health wise, and whilst Hope is very physically and mentally disabled, she has a zest for life, is a mischievous, and fun loving 6.