Freya's life changing surgery

For the past five years, Freya has been in and out of hospital. Upon further investigation, Freya was diagnosed in 2020 with Hypermobility Ehlers Danlos. This is a rare disability that affects the connective tissue in her body. Every body system can be affected. She is in constant pain and suffers extreme fatigue.

As a complication of hEDs, she has developed abdominal vascular compressions. These cause severe nausea, vomiting, pain, rapid weight loss and dehydration. Unfortunately, the NZ public health system does not recognise her condition. They treat her conservatively, and refer to her issues as psychosomatic. This couldn’t be further from the truth and, after two years of gastric issues, Freya has now lost her ability to eat relying on liquid supplements to meet her nutritional needs.

The lack of expertise in NZ has led to our search for alternative specialised treatment. We plan to go to Germany in September for further testing and life changing surgery. However, the cost for this care is a challenge ($140000 - $180000).

Hi, I'm Freya. I am 17 and in my final year of High School. The past two years make me feel as though my life has been taken away from me. All I want is to eat again. I want to play Saturday morning netball again and see my friends every day at school. I want my life back.

Thank you for taking time to read this. Your support is greatly appreciated.