Patient Story Chris is sitting in his room at the Hospice specialised palliative care unit…
Georgia Ferris (Gee) is a 25-year-old woman, with the biggest heart and an inspiring story. Gee was diagnosed with Ehlers-Danlos Syndrome (EDS) at 21; following years of misdiagnosis and much heartache, it was a relief to finally have an answer. EDS has different challenges for everyone diagnosed with it; no two diagnoses are quite the same. EDS is a condition that affects the collagen in your body, and this has left Gee with gastrointestinal failure.
As a young woman being shown around Hospice’s specialist palliative care unit for the first time, Gee remembers it being confronting and feeling “very real”. The unit felt very clinical, and she was concerned about feeling comfortable in the space. Gee explained, “when [the nurses] told me I could bring in anything to help me feel comfortable, that’s just what I did. I learnt very quickly what I could and couldn’t bring in. Now, when I need to come to the unit, I bring suitcases full of bedding, photos, fairy lights, everything I need to make the space feel more like home.
First thing we do when we get there is set up the room and get settled before we see any doctors or nurses.” This is a ritual that makes Gee feel more comfortable, and relaxed at Hospice, which is important when you’re not physically feeling your best. “[The team at Hospice] make sure I can go in to one of the rooms I prefer, and it’s amazing because they really go out of their way to meet my needs.”
Hospice is a place to feel better, and part of that is not feeling anxious to be there. Gee’s mother, Robyn, explains that when Gee is at Hospice, she is “safe and supported” which is a huge relief for the whānau when Gee comes to stay in the unit.
Liv and Robyn are, first and foremost, Gee’s twin sister and mum. They have both also taken on the role of caregivers, helping Gee manage her medications and generally be there for her when she needs it. When Gee’s condition became worse, Liv had quickly taken on the role of Gee’s main caregiver. Gee said, “She would draw up all my IV meds, and that kind of stuff. It was then she kind of went from being my sister to being my nurse, which sucked.” Liv added, “It was a weird transition to all of a sudden step into a role like that. Sometimes it would be nice to just be her sister.”
“It was hard for Liv to go out and be with her friends, to go to parties like you normally would do as a young adult and also have the huge responsibility of managing my medication… When my health got worse, I just said to the nursing team that I don’t want Liv to have to be my nurse, but to just be my sister.” Since then, Liv has been able to focus on being Gee’s sister before anything, which has really helped their relationship as sisters get back on track.
To anyone coming into Hospice for the first time, Gee would suggest “Whatever makes you comfortable in your own home, bring to Hospice if you can. If it’s photos, bring those! If it’s animals, you can even bring them in! The team at Hospice make it really clear for patients and families to make the space their own while they’re there.” The Ferris family feel Nelson Tasman Hospice “oozes love,” starting with being greeted by an amazing team of warm and welcoming staff. “You feel like you’re coming home to another extension of your family. We feel love and support the minute we walk into that door.”
Georgie is also a talented artist. She sells her drawings to help pay for medical expenses and to fund her Peter Alexander pyjamas obsession. You can admire Gee’s artwork and show your support by checking out her Instagram page @georgierosedesign.