A Raymond Terrace man who has devoted a decade of his life to advocating for children with rare diseases has been named the 2019 NSW Grandparent of the Year.
Chris Walker's two grandsons, Jordan and Logan Weir, were born with an extremely rare disease affecting the small intestine's ability to absorb nutrition.
Acting Minister for Seniors, Geoff Lee, said Mr Walker's fight to increase awareness around rare diseases was an incredible story of determination and resilience, which had earned him the top honour in the NSW Grandparent of Year Awards.
"Mr Walker has persevered through some tough times and his campaign to improve the lives of not only his grandchildren but other kids is truly remarkable," Mr Lee said.
The NSW Grandparent of Year Awards recognise and celebrate the state's grandparents, grand-friends and kin carers.
Mr Walker, 56, became an advocate for children with rare diseases after his grandson Jordan, now aged 10, was born with X linked chronic intestinal pseudo obstruction.
It came as a shock to the family when Jordan's younger brother Logan, now aged 7, was also born with the extremely rare condition.
It is believed the boys, who live in Raymond Terrace, are the only two people in Australia with this condition.
As the boys' intestines are unable to absorb enough nutrients from food or fluid to survive, they must use a rare lifesaving intravenous solution known as Parenteral Nutrition.
With support from a multidisciplinary team of health professionals, the boys are able to undertake the therapy at home, where it is called Home Parenteral Nutrition.
Despite battling complications arising from the underlying disease or occasionally associated with Home Parenteral Nutrition, Jordan and Logan both attend primary school, ride scooters, play with toy trucks and trains and enjoy trips in Mr Walker's fishing boat.
"Living on a drip is extremely hard going. All the work I do is to provide a better life for my grandchildren and other children who are living with these rare diseases," Mr Walker said.
"We are a close-knit family. The boys are too young to understand their condition, but our aim is to let them experience as normal a life as possible.
"With planning and careful management most activities are achievable on HPN, which we manage as part of our everyday life".
In addition to helping to care for his grandsons, Mr Walker has spent the past 10 years fundraising, lobbying the government, organising workshops and delivering keynote addresses on Parenteral Nutrition and Home Parenteral Nutrition.
He organised a symposium (education workshop) for consumers, carers and providers of Parenteral Nutrition for intestinal failure, which is now delivered annually by AuSPEN ASM.
This is the only consumer workshop hosted by a professional society anywhere in the world.
Mr Walker said he was "humbled and shocked" to win the 2019 NSW Grandparent of the Year award.
NSW Grandparents Day is on Sunday, October 27.
The family chart Jordan and Logan's lives through the Change for Jordan and Logan Facebook page.