The Little Mouse that Sparked the Loudest Voice in an Aussie Country Town

 

In January 2021, Rhianna Cunningham lost her battle with Vascular Ehlers-Danlos Syndrome (vEDS), a rare genetic disorder characterised by fragile blood vessels and skin that bruises and tears easily. She was only 36 years old.

During her early childhood years, Rhianna was diagnosed with EDS, and grew into a beautiful shy young girl whom her family affectionately called ‘Mouse’

Krysten Jones (nee Cunningham), Rhianna’s sister, explained that when their parents reflected on the past, they could understand that the diagnosis of EDS accounted for her fair skin and susceptibility to easy bruising.

“Our father distinctly remembered the moment when the specialist formally diagnosed her illness and cautioned against an older Rhianna conceiving and giving birth due to the enormous stress it would place on her body. Even the slightest trauma could have catastrophic consequences for her.”

“At that time, the limited research on EDS meant that our parents were presented with the most severe cases through images in medical books.”

“It wasn’t until Rhianna had unexpected emergency surgery in 2021 that we discovered her specific subtype, which turned out to be the vascular variant – vascular Ehlers-Danlos Syndrome or vEDS,” Krysten added.

In 2024 and 2025, her sisters Krysten, Sue-Ellen, Bryony, and Mia continue to honour her memory by raising awareness and funds for Connective Tissue Disorders Network Australia (CTDNA), an organisation that advocates for Australians living with heritable connective tissue disorders (HCTD), including EDS.

In 2023, there was no charity that directly represented Rhianna’s condition, so the girls decided to gift the money raised that year to Rare Voices Australia. However in 2024 newly established CTDNA was up and running and they decided to revive their GoFundMe walk/run and raised money for CTDNA. They had found the perfect recipient of their fundraising efforts; an organisation which would advocate not just for vEDS but for all HCTD.

CTDNA became their chosen charity again in May 2025, because Krysten and her family believe in supporting this local Australian charity focussed on raising awareness of the condition that Rhianna sadly passed away from, and in some way helping other families who have had similar experiences.

In 2025, Krysten and her sisters, ‘The Girls’, as well as cousin, Anna, were aiming to cover as many kilometers as they could, walking and running in May. Early on, they saw their 2025 donations growing quickly, so they set their sights on reaching $2000. They finished up, just shy of $3000. An amazing effort with donations coming from all over the country; Brisbane, Melbourne, Maryborough and of course from Krysten’s home area – the NSW/Qld border town of Goondiwindi.

In Goondiwindi, a collaboration with CTDNA, illuminart: Stories in light and Goondiwindi Lanescape, saw the town’s water towers lit up in recognition of Rhianna on Reds4vEDS Day. ‘The girls’ have been inspired by other not-for-profit organisations too, like LifeFlight, the Stroke Foundation, Qld Police Chaplaincy, and the Ehlers-Danlos Society, who all helped them during Rhianna’s illness.

Krysten, Sue-Ellen, Bryony, and Mia all experienced the heartache of losing their sister in their own unique ways, however they strongly feel that actively fundraising and talking about the effects of EDS to raise awareness and assist other families helps their family and others.

’The girls’ chose a physical challenge to highlight the physical challenges Rhianna lived with and took in her stride, on a daily basis. As Rhianna grew into her teen years, she came to terms with her physical restrictions due to vEDS. “This is something Rhianna was unable to participate in due to vEDS and it serves as a reminder of our fortunate state as healthy individuals. It made me realise how lucky we are.

While aware of EDS, Rhianna was ‘fiercely independent’ and created a varied and fulfilling life, filled with family, friends and travel. As she was approaching her 30th birthday, she made the decision to pack her bags and travel to the United Kingdom to explore and work. Rhianna lived and worked in London on a two-year working visa in London University then returned to Australia after making many memories and lifelong friends, settling in Brisbane.

Then Christmas 2020 came and at the age of 36 Rhianna found herself back at Burrum Heads recuperating after what she thought was a severe migraine. A special family holiday spot that Rhianna had enjoyed every year since her first visit at six weeks old. Her mother took care of her and helped her to regain as much strength as possible.

However, on January 9th 2021, Rhianna’s strength and determination was put to the ultimate test after being flown by LifeFlight to the Royal Brisbane and Women’s Hospital with a bleed on her brain. “The whole family was there for support, and after 5 days Rhianna had again been placed on ‘end of life’ care. By this time we were under no false illusions of what was going to eventuate, we had been guided by the specialists and surgeons at RBWH as to how significant the damage was including explanations of Rhianna’s CT/MRI scans.

As it came to late afternoon and nurse changeover, we all took the opportunity to return to the apartments for something to eat and a quick freshen up.

“After an hour I said to the girls that I was ready to go back and take the first shift. I asked if they wanted to come. It was around 8.45 pm when we arrived at Rhianna’s bedside – just Sue-Ellen, Bryony, and Mia and myself. We spent our time talking with her, playing her favourite music and taking one last photo of all of the girls holding hands in a circle around Rhianna’s bed. I knew that the time was close, so I called our brother Reegan, so that everyone else could make it up to the hospital. We continued to chat away with her, holding her hands, like we had always done. 

“She seemed to have sensed my call for help, and just like she always had been, she didn’t want to draw attention to herself and slipped away quietly, like a mouse.”

“We told her not to be scared, that she was okay, and that we love her, so very much. It was so peaceful. She was held and loved so much,” Krysten said.

Original Article written by Melissa Coleman, Goondiwindi
Updated by CTDNA – June 2025