Redefining the Narrative Around Cancer
In a poignant plea, the parents of a young girl who succumbed to a rare form of cancer have called for a shift in the language surrounding illness. Alan Birikorang and Chiara Contillo’s daughter, Daisy, faced rhabdomyosarcoma, a rare soft tissue tumor, and her journey has sparked a movement to change how we speak about cancer battles. ‘Daisy didn’t lose; she fought valiantly,’ said Ms. Contillo, emphasizing that the terminology often used can profoundly impact a patient’s mental health.
A Journey Marked by Courage and Creativity
Daisy’s spirit shone brightly from a young age. Described by her father as a ‘bubbly and smiley’ child, she had a passion for the performing arts, often creating shows and singing for her family. Ms. Contillo recalled how Daisy began signing her name ‘Daisy Joy’ at school, capturing her vibrant personality. ‘She truly embraced every moment of life,’ her mother reflected.
Facing the Harsh Reality of Treatment
In August 2022, Daisy’s life took a drastic turn when she was diagnosed with cancer. The family embarked on a challenging path filled with nine rounds of chemotherapy and extensive radiotherapy sessions. However, in March 2023, the family received devastating news: new tumors had emerged, and treatments were becoming ineffective. The phrase ‘losing her battle’ was uttered, leading to a profound shift in Daisy’s outlook.
The Impact of Language on Mental Health
The phrase ‘losing the battle’ resonated deeply with Daisy and altered her mental state. Her parents noted that this language suggested a dichotomy of winners and losers in a fight against cancer, which they believe is fundamentally flawed. ‘When she heard those words, we witnessed a change in her spirit,’ Mr. Birikorang shared. ‘It was a turning point for her, one that led to her wanting to retreat and ultimately led to her decision to stop treatment.’
Transforming Grief into Advocacy
Following Daisy’s passing in November 2023, her parents channeled their grief into action by establishing ‘Daisy’s Arc,’ a charity dedicated to funding research for rare childhood cancers. ‘We felt compelled to turn our sorrow into something that could help others,’ said Ms. Contillo. They aim to raise awareness and resources for conditions like Daisy’s, which have historically received limited attention and funding.
A Call for Change in Healthcare Funding
The couple argues that society has failed to provide adequate support for rare pediatric cancers, citing outdated treatments that do not reflect the advancements in medical research. ‘Daisy’s treatment was decades old, and that should not be the case,’ Ms. Contillo remarked. They advocate for increased funding and research initiatives, emphasizing that every child deserves access to cutting-edge therapies.
Remembering Daisy and Inspiring Future Generations
As they navigate life without their daughter, Mr. Birikorang reflects on the deep void left by Daisy’s absence. ‘It feels surreal to speak of her in the past tense,’ he confessed. Yet through their charity work, they find solace in the belief that they are continuing Daisy’s legacy and inspiring change for future generations facing similar battles. ‘We hope to ensure that no other family has to endure what we did,’ they concluded, determined to keep Daisy’s spirit alive.