As Ellie completed her HSC, her increasing health issues were investigated resulting in a diagnosis of a rare, progressive, neurodegenerative disorder.
This genetic condition manifests in many ways and is managed through addressing each different health issue as it arises.
Ellie had been struggling with regulating her body temperature. We were finding as she overheats, Ellie was becoming distressed and physically unwell. It was causing fluctuations in her diabetes management and causing her increased anxiety and distress.
Our amazing social worker at the hospital put us in touch with the Sleapy’s Foundation to investigate getting support to provide heating and cooling for Ellie in her bedroom and the family room.
It was so easy and comforting to be in contact with the Sleapy’s Foundation. It is difficult to navigate the unknown but having the support of Sleapy’s and their staff allowed us to feel positive and proactive.
It may not seem much, but it has made such a difference for Ellie. As a 19-year-old, managing the uncertainty of her health daily, being able to control the temperature around her has given her more control and independence in her day-to-day activities.
We are so grateful to the Sleapy’s Foundation and to all the people along the way who have listened and supported Ellie.
Written by Ellie’s Mum Megan