"We have recently left long-term careers in aged care, Hannah as a nurse and Fallon as a care worker. We are now working together caring for two children with Sanfilippo in their home."
How has caring for a child with a terminal illness like Sanfilippo changed your view of the world?
"We go home to our own children at night with a greater appreciation of our lives and our own situations."
What attracted you to such a role?
"We were encouraged to become disability support workers by a couple of colleagues from our old nursing home. They had also transitioned from aged care and were caring for the kids at home."
What inspires you? What makes you sad?
- To be able to care for someone who is unable to care for themselves is a privilege.
- To have a positive contribution to society is rewarding and fulfilling.
- It makes us feel sad that children with Sanfilippo Syndrome will not live a full life to adulthood.
- It also makes us feel sad that society is unaware of the impact of such diseases that’s why we feel it’s important to raise awareness.
What do you want the wider community to understand about Sanfilippo?
"People need to understand that without the support to fund vital research, families will continue to suffer at the hands of this disease for generations."
How many steps a day are you doing?
"We are walking 10,000 steps every day for the month of November."
What are you looking forward to most about the Steps challenge/what are you looking forward to least?
"We are looking forward to supporting a worthy cause and hopefully every little bit contributes to making a difference."
How's your training going?
"So far so good! Have met our daily targets up til now!"