Family no longer needs Melbourne trips for Henry's rare disease care
A new nurse role at Albury Wodonga Health lets families get specialist care locally. They don't have to travel to Melbourne.
Henry Norton has atypical haemolytic uraemic syndrome, a rare kidney disease. He was diagnosed when he was only seven months old.
For three years, his family travelled to Melbourne every two weeks for transfusions. They stayed overnight in hotels or Ronald McDonald house.
Now Henry is four. He can receive transfusions every two months at Albury hospital.
A new paediatric comprehensive care liaison nurse role makes this possible. Danielle Hanlon, a children's ward nurse for almost 20 years, starts this position.
The family can now stay home together. His father Craig can help with care, and his older brother Lachlan can attend preschool normally.
The role is funded by community donations including $300,000 to Country Hope. It shows that families outside Melbourne struggle with the time and cost of regular specialist appointments.
- 7 months old
- Henry's age at diagnosis
- 4 years old
- Current age
- Every 2 weeks to every 2 months
- Transfusion frequency change
- $300,000
- Funding for role
Why it mattersRural families no longer lose months to travel for specialist care. Keeping families together improves a child's recovery and emotional wellbeing.
AustraliaRural and regional Australian families with children needing ongoing specialist treatment can now access care closer to home, reducing travel burden and family separation.
✓ Claims checked against the source and corrected before publish. checked 9 d ago
