Suzi and Trisha
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
Suzi is in primary school and has Prader-Willi syndrome (PWS), a genetic disorder.
‘The people that meet [Suzi] … she just impresses upon them with her vitality and her vibrance and her kindness and her sort of love of the world,’ Trisha, her mum, told the Royal Commission. ‘She’s such a bubbly little child and she has a lot to teach us about resilience and about, you know, working hard and persevering.’
PWS is complex, and people with the disorder can have trouble regulating their body temperature and showing pain. Trisha said doctors sometimes struggle to tell if Suzi is sick.
‘It can be hard to determine what’s going on and I understand that. I am the first person to help a doctor walk through those things … But her needs and her mental condition have been let go, ignored and let develop into serious, very serious illnesses that would never have been allowed to happen if she did not have Prader-Willi syndrome.’
Several years ago, Suzi lost her speech, had trouble walking and developed seizures. Trisha took her to hospital where the doctors ‘refused to believe there was anything major wrong’.
‘There’s a whole bunch of things that they just don’t believe because they don’t want to believe. And so, you know, when I kept presenting they said, “We don’t really believe that … She’s not really sick” … I was literally begging.’
Even when a neurologist suggested more tests, the hospital discharged Suzi.
She was eventually diagnosed with autoimmune encephalitis from an allergy.
When Trisha returned to the hospital to ‘have a chat with them about how do we learn from this’, the doctors wouldn’t listen.
‘They said I didn’t have enough trust in them. It was my fault because my trust wasn’t good enough.’
Trisha and her family later moved to another state, where she said doctors ‘always listen to you’ and parents can ask for clinical reviews if their children aren’t improving.
‘I just want somebody to understand that you can’t say to a parent that they’ve just got it wrong all the time. Because in fact this little girl really needed you to listen and to try and solve it for her, because I can’t solve it. I’m not a doctor. All I can tell you is what’s going on with her.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.