Our Inspiration

Martin Watson with his daughter Hannah. The home will provide holistic care which focuses on the emotional, social and physical needs of the child starting from diagnosis and continuing throughout the child’s life. Services will be available to children from all faiths, cultures and ethnic backgrounds. The importance of religious customs and cultural needs essential to the daily lives of each family will be respected.Hannah’s House has been inspired by Hannah Watson who was born in 1991 and passed away in 2010. Hannah had a rare syndrome called Opitz Trigonocephaly. She had profound intellectual and physical disabilities as well as chronic and complex medical conditions. She found it difficult to swallow, move, vocalise or display emotions, and had to be fed through a gastronomy button. Hannah required 24-hour nursing care including hourly feeding, oxygen therapy, and management of distress and agitation.

In 1996 the Watson family left Perth for a four month visit to the UK. During this period Hannah’s parents, Jacky and Martin, were introduced to Francis House, just outside Manchester, which cared for children with life-limiting illnesses like Hannah’s. Jacky and Martin had no idea what to expect from Francis House but were overwhelmed by the warm welcome they received and the competence of staff caring for Hannah. There was a great sense of community where the relentless care of a dependent or sick child could be shared and friendship and support offered in a practical way. It was, in every sense, a home away from home.

Their experience at Francis House inspired them to work towards building a facility here in WA to help parents in similar situations. A welcoming centre that would be fun and engaging for the child and also allow parents to feel secure in the knowledge that their child was being well cared for whilst they took a break. This opportunity to relax helps inspire and rejuvenate families, giving them the energy they need to continue with the full-time care of their child or children.

This is Jacky’s Story

Modelled on a typical home environment, the home will include private children’s bedrooms for planned respite stays and a small number of additional rooms to offer emergency care. Some of the rooms will be adjoining allowing family members to stay close. The home will be modern, vibrant and designed with the children’s needs in mind. A central lounge and a communal dining room will encourage carers, children and their families to eat meals together and offer plenty of space for activities, games and teenage entertainment. Indoor and outdoor play areas will also benefit the child and their siblings and provide the opportunity to deliver a range of occupational and play therapies.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 co-ordination 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 anti-convulsant 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/pharangeal tube to assist her breathing. She required oxygen at home and CPAP at night.

Jacky Watson with her daughter HannahHer 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.