Sisters make the best friends in the world for a Bonnie Lass named Rhianna
In January 2021, Rhianna lost her battle with Vascular Ehlers Danlos Syndrome (EDS), a rare genetic disorder characterised by fragile blood vessels and skin that bruises and tears easily. She was only 36 years old.
Now, her sisters Krysten, Sue-Ellen, Bryony, and Mia want to honour her memory by raising awareness and funds for Rare Voices Australia, an organisation that supports Australians living with rare diagnoses, including EDS.
To kick off their first fundraiser of many to come, ‘The Girls’ aim to cover 200 km this May by walking or running. Up to this point, they have surpassed their initial fundraising objective by raising over $1200 in generous donations. As a result, they have set their sights higher and are now striving to reach $2000. Inspired by the overwhelming support, they are already making plans for their next fundraising campaign, Run for Rhianna, in 2024.
Goondiwindi local Krysten Jones said they chose Rare Voices Australia because they believed it would be a starting point for their fundraising efforts, even though it isn't specifically focused on EDS research.
“May is Ehlers Danlos Awareness Month in the United States where they promote quite a significant awareness campaign,” Krysten said. “We opted to support this charity because Ehlers Danlos syndrome is not as widely recognised in Australia.”
“There is no specific organisation that focuses on EDS research; there are however support groups I’ve found on Facebook,” she said.
The girls were inspired by the organisations that helped them during Rhianna's illness, such as LifeFlight, the Stroke Foundation, QLD Police Chaplaincy, and the Ehlers Danlos Society and want to give back to these organisations in the future and raise awareness about EDS.
Krysten, Sue-Ellen, Bryony, and Mia all experienced the heartache of losing their sister in their own unique ways. Now, after nearly two years, they have reached a point where they feel prepared to take action by fundraising and talking about the effects of EDS.
Rhianna's journey began in January 1984 when she was born in Maryborough weighing only six pounds and 15 and a half ounces. She was the fourth child of Jeff Cunningham and his wife Debbie, extremely quiet and with skin as soft as butter.
When Rhianna was six weeks old the family travelled to Burrum Heads for the first of many Easter holiday camping trips.
“This became a very special family place, and the tradition of an annual camping holiday began that year,” Krysten said.
During her early childhood years, Rhianna was diagnosed with EDS, despite growing into a beautiful shy young girl whom her family affectionately called Mouse.
Krysten explained that when their parents reflected on the past, they could understand that the diagnoses 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 medical books that contained images.
"It wasn't until Rhianna had surgery in 2020 that we discovered her specific subtype, which turned out to be the vascular variant," Krysten added.
As Rhianna grew into her teen years, she came to terms with her inability to have children and her restriction from participating in contact sports.
This was one of the factors that influenced the sisters' decision to opt for a physical challenge.
“This is something Rhianna was unable to participate in due to EDS and it serves as a reminder of our fortunate state as healthy individuals. It made me realise how lucky we are. Rhianna embraced life to the fullest, and it’s motivated us to do the same,” Krysten said.
The Cunningham family grew by two in 1994 and 1996, resulting in a family of eight. Rhianna became a proud big sister to the new additions.
“Rhianna would often take us on the bus into town on a Saturday to go to Donut King for a frozen coke and to browse the shops,” Krysten said. “We have so many fond memories of her in her role as big sister.”
As children grow up and eventually leave home, ‘fiercely independent’ Rhianna did the same. She was approaching her 30th birthday, when she made the command decision to pack her bags and travel to the United Kingdom to explore.
“She loved it there. We were concerned, of course, about her fragile physical state. We asked her that if she couldn’t carry the wheelie bin empty from the kerb to the house, how was she going to manage a 30 kg suitcase at the airport by herself?”
“But she told us not to worry and that she was sure the Uber driver would take care of it,” Krysten said.
Rhianna lived and worked in London on a two-year working visa in the accounts payable department of the London University then returned to Australia after making many memories and lifelong friends.
She settled in Brisbane and gained employment as an account administrator. In her spare time, she enjoyed road-tripping to Melbourne and Sydney to see theatre shows or football, tennis matches and live concerts. She also loved going to Doomben in Brisbane to watch the horse racing.
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. Her mother took care of her and helped her to regain as much strength as possible.
However, on January 9, 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, Rhianna had been placed on ‘end of life’ and as it came to late afternoon and nurse changeover, we all took the opportunity to have 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 time talking with her, playing her favourite music and taking one last photo of all of the sisters holding hands in a circle around Rhianna’s bed. That’s when I noticed that the time for Rhianna to pass was close, so I called our brother Reegan, as we chatted I held her hand like we always had 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 don’t be scared, that it was okay, and that we love her so very much. It was so peaceful. She was held and loved so much,” Krysten said.
Link to Run for Rhianna Gofundme - https://www.gofundme.com/f/317y3h7snc
Rare Voices Australia is the national peak body for Australians living with rare diseases. They work tirelessly to provide a strong, unified voice to advocate for policy and health systems that work for people living with rare diseases. Their person-centred approach involves working with all key stakeholders, including people living with rare diseases, governments, key peak bodies, researchers, clinicians, and industry, to ensure the best outcomes for those affected.