Wollongong girl Amarli Broome celebrated her seventh birthday in hospital. Photo: Jade Broome.
Amarli Broome wanted a pool party for her seventh birthday this year, while her mum thought they should throw a disco party.
Instead, Amarli’s family celebrated her birthday in hospital.
The Broomes are no strangers to Wollongong’s pediatric unit, or Westmead Children’s Hospital. Amarli was born with an incredibly rare genetic disorder, GRIK2.
There are only 12 documented cases in the world.
Amarli’s resilience has inspired an army of people – Amarli’s Army – to rally behind her family and do what they can to fund research into GRI disorders.
In 2024 they joined Amarli’s mum, Jade for the Stanwell Tops to Wollongong leg of her trek between Westmead and Wollongong hospitals, where Amarli has spent so much of her life.
This year they plan to do it all gain, with all funds raised going to the Illawarra Convoy.
“Last year we were able to give a portion of the money we raised to Sydney Children’s Hospital, Wollongong Hospital and the CureGRIN Foundation,” Jade said.
“We received so much support and love we want to give back through the Illawarra Convoy this year.
“There’s so much hope for Amarli and other children like her, that’s why it’s important to share her story.”
Jade said gene therapies had worked a miracle for a little girl in Canada with a related gene disorder, and she is hopeful in the near future something similar will be available for Amarli.
Until then the family is consumed by the full-time job of keeping Amarli alive.
Amarli with her parents, Lee and Jade, on her seventh birthday. Photo: Jade Broome.
Amarli can’t walk or talk, although this year she has learnt to communicate using a device. She suffers seizures and is vulnerable to infections.
“Amarli is really fragile,” Jade said.
“We go to hospital and have awful conversations with the doctors every time about what our wishes are.
“I speak to a mum in Canada and her little girl received gene therapy; five years on she’s walking, verbalising, and eating McDonalds. Her mum said it’s like she’s been reborn.
“I’m hopeful that can happen for Amarli. She’s so resilient and cheeky. She can have a horrible day and then she just has this big smile.
“If we can reduce the severity of her symptoms and improve her quality of life, that would be incredible.”
Jade and Amarli’s Army will be joined by two more people this year – Amarli’s dad, Lee, and big brother, Bohdi (9).
Last year Lee and Bohdi were trekking up and down the Snowdon ranges in Wales, to help raise money for Amarli’s medical needs and the CureGRIN Foundation.
This year they’ll walk with Amarli’s Army.
“I’m excited they’re home this year,” Jade said.
“I can’t describe the feeling when we met all the walkers at Stanwell Tops last year; I cried.
“We don’t feel alone anymore; it’s like a weight has been lifted off our shoulders.”
The Broome family will walk from Sydney Children’s Hospital to Wollongong Hospital on Sunday 24 August.
The community is invited to join them at 91a Lawrence Hargrave Drive, Stanwell Park to complete the walk, with breakfast provided at Thirroul followed by a family fun day at Wiseman Park Bowling Club from 2 pm.
To sign up, head to the event’s website.
