Hannah Watson was born on November 11, 1991 with Opitz Trigonocephaly Syndrome. Around 50 per cent of children born with this rare condition die before their first birthday.
Hannah survived this crucial first year, and with occupational, speech and physiotherapy, she was able to move and vocalise. But at 21 months, Hannah suffered a three-day seizure that saw her health decline. She found it difficult to swallow, move, vocalise or display emotions, and had to be fed through a gastronomy button.
Now 17 years old, Hannah needs 24-hour nursing care, including hourly feeding, oxygen therapy, and management of distress and agitation. Hannah’s parents Jacky and Martin care for her at home, with the help of a small, committed team of carers. Because Hannah requires care throughout the night, Jacky and Martin are only able to sleep undisturbed three nights a week when Hannah’s carers work night shifts.
Hannah’s need for constant care can be exhausting for the Watson family. They can rarely enjoy doing things on the spur of the moment or make much time to relax. Jacky and Martin’s experiences inspired them to work towards building a facility to help parents in similar situations. As founding members of the Children’s Hospice Association, their goal is to build a centre called Hannah’s House, where children with life-limiting illnesses can go to have fun and receive professional care while their families take some well-deserved time for themselves. This opportunity to relax will inspire and rejuvenate families, giving them the energy they need to continue the full-time care of their children.
The Children’s Hospice Association.
The Association’s board was established in 2000, and its members come from diverse backgrounds, including parents of children with life-limiting conditions, legal, marketing, financial, medical and teaching backgrounds. Hannah’s House is dedicated to providing assistance for families in need of respite care and support. The Children’s Hospice Association Inc. (trading as Hannah’s House) is a not-for-profit, registered gift-deductible charity.
