🚨 THIS SHOULD NEVER HAVE BEEN A FIGHT 🚨
- News Team
- 7 days ago
- 2 min read
Updated: 6 days ago
For the past several weeks, our beautiful Amarli has been fighting for her life once again.
After being admitted to hospital with severe respiratory complications, Amarli was intubated and transferred to Sydney Children’s Hospital before returning to Wollongong Hospital. She is recovering on antibiotics after being extubated and needs her family and carers by her side as she looks to get back home sometime in the near future.
As many know, Amarli lives with extremely high care needs and is currently funded for 24/7 1:1 support through the NDIS.
But last week, in the middle of this medical crisis, Jade was informed that Amarli’s skilled carers would NO LONGER be allowed to be beside her in hospital.
Not because extra funding was requested. Not because support wasn’t approved. Not because the Carers weren’t needed.
Simply because the NDIA decided existing approved supports weren't required while Amarli was in hospital.
This decision caused enormous stress and anxiety for Jade, who has been by Amarli’s side day and night while also trying to hold everything together for her family.
At one point, the pressure became so overwhelming Jade herself was close to ending up in Emergency.
Meanwhile, doctors, nurses, hospital staff and anyone who truly understands Amarli’s care needs all supported the Carers remaining there.
Because they KNOW the difference they make.
These Carers are not “extra.”They are part of Amarli’s safety, routine, communication, comfort, and survival.
Late Saturday evening, after public pressure, media attention, advocacy, and an outpouring of support from families across Australia, the Deputy CEO of the NDIA personally contacted Jade to approve four days of care while the matter is reviewed this week.
We are hopeful common sense will prevail.
But this fight is now bigger than Amarli.
The messages we have received from other families have been heartbreaking.
Children denied urgent supports. Families pushed beyond breaking point. Parents left alone in hospitals during the darkest moments of their lives.
Yes - the NDIS must be managed responsibly.
But NOT at the expense of vulnerable children with profound disabilities and complex medical needs.
Families should not need media attention, public pressure, or emotional collapse to access support that is already approved and already funded.
Jade has made it her mission not only to fight for Amarli but to stand up for every family facing the same battle.
To everyone who has supported us:THANK YOU ❤️
To the incredible staff at Sydney Children’s Kids & Wollongong Hospital: THANK YOU ❤️
To our amazing Carers:THANK YOU ❤️
To the community, advocacy groups, and the overwhelming number of families who have shared their stories: We hear you. We stand with you...and we will keep flying the flag.
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