NSW CHAMPION

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Suzanne Turpie (she/her)

LIVED EXPERIENCE
Maternity, Carer - Disability, Paediatric, Cancer, Neurology

KEY INFORMATION

Place of Birth: Port Macquarie, Australia
Current location: Australia
Age: 37 years old
Language/s: English only
LGBTQIA+: No
NDIS Participant: Yes (son)
Diagnoses: Medulloblastoma (Brain Cancer) - son (carer)
Healthcare Access: Primary Health Care, Allied Health, Mental Health, Secondary and Tertiary care

BIO

In 2015 when Suzanne's son Caleb was only 9 years old, he was diagnosed with a fast-growing Medulloblastoma (brain cancer) and was immediately transported to Sydney where he underwent brain surgery three days later, followed by chemotherapy and radiotherapy. Without this surgery he was only given two weeks to live. After this surgery, Caleb was unable to move the right side of his body or his face, and completely lost his ability to smile. With extensive physiotherapy and rehabilitation, Caleb relearnt how to stand and walk again. In 2018, Caleb underwent a six hour surgery to restore his smile - a piece of muscle from his leg was taken with microsurgery then used to attach a nerve within the muscle to another nerve in Caleb’s cheek – one ordinarily responsible for chewing and clenching. The surgeon then joined artery to artery and vein to vein with sutures finer than hair, magnified eight times under a microscope. This pioneering surgery and admission has paved the way for other people as young as 11 to be treated at Lifehouse in Sydney. Suzanne has been the biggest advocate for Caleb since receiving his diagnosis, and wants to extend this advocacy to support all young people facing various diagnoses to improve their care, experiences and quality of life. Suzanne took part in a Senate Committee into Funding for Research into Cancers with low survival rates, and made a parliamentary submission where she identified gaps and detailed recommendations for improvements in holistic care, social support and hospital systems from her experiences with Caleb. For Suzanne and her family, raising awareness, sharing their story and creating positive change from Caleb's experiences are paramount. 

 

ACHIEVEMENTS

LINKS

  • Co-presented at Camp Quality

  • Chapter written about son Caleb's story in 'You're So Lucky' by Grace Wethor (author)

  • Featured in Senate Enquiry regarding rare diseases (mother participated with Caleb's input)

  • Various speeches to promote not-for-profits and encourage charitable donations

  • Featured in Media across Australia

  • Part of an art exhibition at Sydney Children's Hospital

  • Currently promoting Chris O'Brien Lifehouse 'Go The Distance in August' campaign