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Wollongong girl Amarli Broome celebrated her seventh birthday in hospital. Photo: Jade Broome.<\/p>\n
Amarli Broome wanted a pool party for her seventh birthday this year, while her mum thought they should throw a disco party.<\/p>\n
Instead, Amarli\u2019s family celebrated her birthday in hospital.<\/p>\n
The Broomes are no strangers to Wollongong\u2019s pediatric unit, or Westmead Children\u2019s Hospital. Amarli was born with an incredibly rare genetic disorder, GRIK2.<\/p>\n
There are only 12 documented cases in the world.<\/p>\n
Amarli\u2019s resilience has inspired an army of people \u2013 Amarli\u2019s Army \u2013 to rally behind her family and do what they can to fund research into GRI disorders.<\/p>\n
In 2024 they joined Amarli\u2019s 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.<\/p>\n
This year they plan to do it all gain, with all funds raised going to the Illawarra Convoy.<\/p>\n
\u201cLast year we were able to give a portion of the money we raised to Sydney Children\u2019s Hospital, Wollongong Hospital and the CureGRIN Foundation,\u201d Jade said.<\/p>\n
\u201cWe received so much support and love we want to give back through the Illawarra Convoy this year.<\/p>\n
\u201cThere\u2019s so much hope for Amarli and other children like her, that\u2019s why it\u2019s important to share her story.\u201d<\/p>\n
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.<\/p>\n
Until then the family is consumed by the full-time job of keeping Amarli alive.<\/p>\n
![\"Amarli](\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2025\/08\/31406070116601-1-900x1200.jpeg\")
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Amarli with her parents, Lee and Jade, on her seventh birthday. Photo: Jade Broome.<\/p>\n
Amarli can\u2019t walk or talk, although this year she has learnt to communicate using a device. She suffers seizures and is vulnerable to infections.<\/p>\n
\u201cAmarli is really fragile,\u201d Jade said.<\/p>\n
\u201cWe go to hospital and have awful conversations with the doctors every time about what our wishes are.<\/p>\n
\u201cI speak to a mum in Canada and her little girl received gene therapy; five years on she\u2019s walking, verbalising, and eating McDonalds. Her mum said it\u2019s like she\u2019s been reborn.<\/p>\n
\u201cI\u2019m hopeful that can happen for Amarli. She\u2019s so resilient and cheeky. She can have a horrible day and then she just has this big smile.<\/p>\n
\u201cIf we can reduce the severity of her symptoms and improve her quality of life, that would be incredible.\u201d<\/p>\n
Jade and Amarli\u2019s Army will be joined by two more people this year \u2013 Amarli\u2019s dad, Lee, and big brother, Bohdi (9).<\/p>\n
Last year Lee and Bohdi were trekking up and down the Snowdon ranges in Wales, to help raise money for Amarli\u2019s medical needs and the CureGRIN Foundation.<\/p>\n
This year they\u2019ll walk with Amarli\u2019s Army.<\/p>\n
\u201cI\u2019m excited they\u2019re home this year,\u201d Jade said.<\/p>\n
\u201cI can\u2019t describe the feeling when we met all the walkers at Stanwell Tops last year; I cried.<\/p>\n
\u201cWe don\u2019t feel alone anymore; it\u2019s like a weight has been lifted off our shoulders.\u201d<\/p>\n
The Broome family will walk from Sydney Children\u2019s Hospital to Wollongong Hospital on Sunday 24 August.<\/p>\n
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.<\/p>\n