Hannah arrived just before midnight on the 11th November 1991. She was our first child and we had no reason to think that there would be any problems. It was immediately obvious that something was wrong when she needed resuscitation.

Having a seriously ill child was completely unexpected and for which we were totally unprepared. Prior to this, we had had very little to do with hospitals and so, for the first few years, we were on a steep learning curve trying to find out about her condition so that she could have the best possible life. During the first few months, it became clear that it would be impossible for me to return to work and, as Martin was working away from home for much of the time, I became the primary carer.

Initially, Hannah had trouble feeding and failed to thrive. At 14 months she was diagnosed with Opitz Trigonocephaly Syndrome and the prognosis was poor – only half the children diagnosed with this rare condition survive their first year. Once we had a diagnosis, we could access an early intervention programme and Hannah started receiving regular physio, OT and speech therapies. The speech therapy helped enormously with the coordination of her swallow reflex and the feeding problems she had always experienced and, together with the other therapies, she began to make some progress.

She had her first seizure at 9 months and despite a cocktail of anticonvulsant medications she continued to have complex seizures which required frequent hospitalisation. Her last severe seizure was at 21 months, it took days to get under control and caused her to be put on life support. We prepared ourselves for the worst and the possibility that she would never breathe again by herself. This is the most difficult and heart-wrenching decision any parent can face. But Hannah clearly demonstrated her resilience and fight. She pulled through against all the odds and was taken off the machines. However, her general health declined, she was no longer able to move by herself and feeding became an issue again. She needed to be fed through a gastrostomy button and her low muscle tone eventually caused her to have contractures and severe kyphosis/scoliosis. She had difficulty maintaining her airway and eventually needed a nasal/pharyngeal tube to assist her breathing. She required oxygen at home and CPAP at night.

Her deteriorating condition made it increasingly difficult to use out-of-home respite because she required nursing care and, all too frequently, the stay was curtailed or it ended with a trip to hospital. Once the benefits of free time for us as a family were outweighed by the disadvantages, it became easier for us to keep her at home and limit car travel to essential appointments and school. However, whilst mostly keeping Hannah out of hospital, this decision took a significant toll on us and we felt quite isolated. Hannah was never routinely able to sleep through the night and the seemingly endless nights of broken sleep were incredibly difficult to deal with. We were constantly tired and struggling to cope.

Eventually, when she was about eight, we managed to get fortnightly overnight care in-home for her which certainly helped. Hannah’s continual deterioration eventually led to the need for increased respite hours and when she was about 14 we received enough funding for 3 nights a week of overnight care. When she was almost 17, we had our first family holiday, secure in the knowledge that Hannah was being well cared for in our home by a fabulous team of carers. The freedom of having a holiday without the usual regimental timetable was incredible, especially for our youngest daughter, and we all came back feeling well-rested and energised.

Whilst life with Hannah wasn’t without its challenges there were also many rewards along the way. She taught us a lot about patience, about determination, about resilience. We learned a lot from her – about ourselves and about others. It amazes me that someone with apparently so little to offer has managed to inspire so many wonderful people into helping other families who are also facing significant challenges. She forced us to slow our pace. One of our greatest pleasures, and hers, was being able to sit down and give her a cuddle and read her latest book to her. Witnessing the special bond develop between Hannah and her sister Tess has been one of our greatest joys as parents. She brought so much into our lives.