TONY and Josi Demetriou of Cronulla have one wish this Christmas: that their daughter Lulu be well enough to spend it at home.
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LuLu, 3, has an aggressive form of neuroblastoma, a complex cancer that has no known cure and poor survival rates.
The bubbly toddler has been in hospital each Christmas since she was diagnosed at 8 months.
She has exhausted all proven treatment options in Australia, including 12 rounds of chemotherapy, 14 rounds of radiotherapy and a stem cell transplant.
Neuroblastoma is the third most common childhood cancer after leukaemia and brain tumours, yet it attracts little attention and funding.
Lulu has stage 4, meaning the neuroblastoma cells have spread to other parts of her body.
Her parents had to give up work to care for their child, who is fed through a tube and is unable to play with other children because of the risk of infection.
In a cruel twist of fate, Mrs Demetriou was diagnosed with thyroid cancer earlier in the year.
Despite her health battle, Lulu marvels at the little joys in life, including cuddles from her parents and the sparkle of baubles on her Christmas tree.
‘‘I know that there is a cure out there,’’ Mrs Demetriou said. ‘‘But it is a massive thing that requires funding, awareness, and a commitment by the pharmaceutical companies to see profit value in making the investment in research.
‘‘Lulu is very much isolated from the world. She should be having fun and playing outdoors.’’
Local businesses such as Dutchee Dutchee fashion boutique at Cronulla have helped raise money for the family, who rely on a modest pension to help cover expenses including the mortgage. A raffle being held by Dutchee Dutchee, to be drawn on Tuesday, December 24, has so far raised about $3500.
Neuroblastoma Australia is also holding its inaugural Neuroblastoma Awareness Day at Sydney Park, St Peters, on February 2.
The date was chosen to reflect the average age [2] that children are diagnosed with the disease, and because February is Australian Childhood Cancer Awareness Month.
YOU CAN HELP
Dutchee Dutchee in Cronulla has set up an account for the Demetriou family:
St George Bank, account name Board ABC, BSB 112879, account number 430642732.
People can also donate in store at shop 14/12 Surf Road, Cronulla.
Neuroblastoma affects one in every 100,000 children.
Details: http://neuroblastoma.org.au/
