Leila Rose Chow
Leila Rose was 10 months old when she was diagnosed with a rare and aggressive cancer in 2009. She was diagnosed and treated at a leading children’s hospital in Australia. Her cancer was so rare that the hospital had only seen two other cases. The cancer specialists were able to give us the initial treatment regime but when that failed they could offer no other options.
Our fight for her life showed us the pain and frustration experienced by families when their kids are diagnosed with rare and incurable diseases.
For us, there was a thirst for knowledge, a burning drive to make sure that no stone was unturned and that every possible treatment option was considered. We also desperately wanted to achieve a balanced life for Leila – particularly in her last months. Being from the country this was even harder, and walking the fine line of being at home with her family and in Melbourne where her treatment was needed was always a difficult decision. We wanted our daughter to be continually in the company of her family, to feel that connectedness, despite her treatment.
Unfortunately our experience was that these needs were unmet by the health system. The lack of funding by the health system meant that excellent practitioners did not have the capacity or resources to meet our needs.
After the passing of Leila, we wondered how many other families had experienced this turmoil and how many are still going through it.
We established the Leila Rose Foundation in 2011, in memory of our daughter
Dr Andrew Chow & Tracy Chow – Founders of Leila Rose Foundation