By Luke Voogt
A bureaucratic blame game has denied an eight-year-old with cerebral palsy vital household items, according to her distraught Whittington mother, Amy Karlberg.
A house fire in July further worsened the family’s plight after it destroyed a spa which served as her daughter’s main source of pain relief.
“My daughter is one of the strongest bravest people I know,” Ms Karlberg said.
“She is my world – I just want her out of pain – she’s so little and she has to struggle so much.”
Ms Karlberg woke up 4am one morning in July in a daze and surrounded by smoke.
“I couldn’t really see or breath and I thought I was still dreaming,” she said.
She carried her daughter Nalah from their home and rescued two cats they had adopted.
“It was really scary. If I had gone back to sleep I’m pretty sure we would have all died of smoke inhalation,” she said.
Nalah, who was born premature at 25 weeks, has cerebral palsy, a movement disorder called dystonia and hip dislocation problems.
She underwent major surgery to prevent falls which could paralyse her for life at the Royal Children’s Hospital in February.
“They broke both her femurs, realigned them and placed rods into her joints and pins down her thighs,” Ms Karlberg said.
When the family returned home in late March Ms Karlberg used the spa to manage Nalah’s pain as she came off medication.
“It was helping her so much,” she said. “Since (the fire) she has been very sore and not able to sleep very well.
“I don’t want to have my child on painkillers and Valium – she’s eight years old.”
But Ms Karlberg, who cares fulltime for Nalah on a carer’s pension, could not find the funds to fix the spa so she set up a Gofundme page as a last resort.
“I am not one that usually asks for help but I feel like I have tried everything I can,” she said.
“It’s the main thing I’d want for her because of the pain situation. She had four days off at school recently for the pain.”
The Royal Children’s Hospital requested Ms Karlberg to measure her house and get quotes for door ramps, rails and a bath hoist after the surgery, she said.
But six months later the family was still waiting for the vital equipment.
The hospital and the National Disability Insurance Agency (NDIA) were at odds as to who should fund the items, Ms Karlberg said.
“I don’t know how many hours I’ve sat (at the NDIA) over the last couple of months.”
Ms Karlberg said she had hurt her back on multiple occasions caring for her daughter.
She said she hoped Geelong residents could donate to her “beautiful angel” to help her recovery.
“She’s borrowing a wheelchair that’s falling apart. It’s very frustrating for her because she’s such an active kid.
“It would mean the world to us.”
Both an NDIA and a hospital spokesperson declined to comment on individual cases due to privacy reasons.
“The Royal Children’s Hospital provides clinical equipment for 30 days post discharge,” the hospital spokesperson said.
“After this point equipment is managed by the NDIA with the family.”
The NDIA worked closely with other services to ensure access to support, its spokesperson said.
“The NDIS is not intended to replace the clinical supports or services provided by other mainstream services like the health system. If a participant thinks a decision made by the NDIA about them is wrong, they can submit an application for an internal review.”
To help Nalah visit www.gofundme.com/46t4u54.
