Alice Kocatekin, the 14-year-old girl who won the hearts of an entire community, has lost her battle with mitochondrial disease.
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Alice died in her bed in the early hours of yesterday morning. She was surrounded by pictures of the Eiffel Tower and prints of Rome - memories of a European trip in 2010 and gifts from her April birthday.
Her mother, Kate, brought Alice home from Wollongong Hospital two weeks ago after doctors informed her she didn't have long to live.
The day before, 300 residents from the northern Illawarra gathered at Austinmer Surf Club for An Afternoon for Alice which raised more than $42,500 for the family.
Alice was in fine spirits at the party, dancing in her wheelchair, her face painted with a sparkly blue dolphin, enjoying the love that surrounded her. The community fell in love with Alice's smile, her determination to beat the odds and her love for life.
She had packed a lot into her 14 years, learning to surf and ride a horse, participating in three City2Surfs and backpacking through Asia with her mum and brother Henry.
A year ago she battled the heat and flies to walk around the base of Uluru. The trip, for her 13th birthday, also included a hot-air balloon ride.
Alice was diagnosed at the age of two with Usher's syndrome. She needed cochlear implants and had balance and learning difficulties. However, a more sinister ailment lay dormant - mitochondrial disease - which leeches the body's cells of energy. Since November last year it has attacked her ability to speak, eat and walk, and yesterday it claimed her life.
Alice's funeral will be held on Saturday at 1pm at Austinmer Public School hall, followed by a wake at the Austinmer Surf Club.
