The week Ross's mum Robyn was admitted to hospital was the week she was meant to fly to Tasmania to meet his twin daughters for the first time.
They were only 12 weeks old when their grandmother died due to complications connected to the first dose of the AstraZeneca COVID-19 vaccine.
"She was a very generous and loving woman," Ross told ABC Radio Melbourne.
"Loved to have a laugh, and also very stubborn and bloody-minded when she wanted to be.
Robyn died within weeks
Robyn's children say their mum was a "fit and healthy" 77-year-old they expected to have around for another 10 to 15 years.
She got her first dose of the AstraZeneca vaccine in July 2021.
Within weeks Robyn went from doing her own shopping and loading firewood to being paralysed, relying on her children and hospital staff to hand-feed her.
She also experienced delusions and hallucinations.
"It was horrendous, like torture," her daughter Jo said.
"It was watching your world suffer … she suffered so much."
She died in hospital on September 5 last year, leaving four children, six grandchildren and three cats.
The cause of death listed on her death certificate is "Guillain-Barre syndrome in the setting of recent AstraZeneca vaccination".
What happened to Robyn was incredibly rare
The Therapeutic Goods Administration (TGA) says "since the beginning of the vaccine rollout to 8 May 2022, almost 58 million doses of COVID-19 vaccines have been given".
The TGA has identified 11 deaths linked to the first dose of AstraZeneca – "eight were thrombosis with thrombocytopenia syndrome (TTS) cases, two were linked to Guillain-Barre syndrome (GBS), and one was a case of immune thrombocytopenia (ITP)".
Robyn's children said the unlikeliness of their mother's death made it more traumatic.
"My whole life kind of fell apart … everything's gone bad since then, really."
The family are speaking publicly for the first time to advocate for greater government support for people who find themselves in a similar position in the future.
What is Guillain-Barre syndrome?
GBS is a different condition to the blood clots (TTS) that were widely reported in connection with the AstraZeneca rollout last year.
Director of SAEFVIC (Surveillance of Adverse Events Following Vaccination in the Community) Nigel Crawford described GBS as an autoimmune condition where your body essentially attacks your peripheral nerves.
"You get weakness over time and some tingling and loss of sensation that could be quite severe," he said.
"It can actually mean that you can't move your arms and legs and can start to affect your lungs."
A 2021 study published in nature medicine found for every 10 million people vaccinated against COVID with AstraZeneca there would be about 38 excess cases of GBS.
The additional risk of GBS following a COVID-19 infection was almost four times that, with 145 cases expected for every 10 million positive COVID tests.
"It's taken extremely seriously," Dr Crawford said.
"It's more likely to happen with the infection than the vaccine itself, so therefore supportive of the vaccination program."
Dr Crawford said once it was picked up, there were treatments available for GBS, and most patients would recover from the condition.
"It is a very serious neurological condition, which we need to try and minimise," he said.
No link has been found between the MRNA COVID vaccines and GBS.
Because the MRNA vaccines are the preferred option for boosters, Australia is no longer using many doses of the AstraZeneca vaccine – therefore Dr Crawford did not expect to see many, if any, further cases of GBS due to COVID-19 vaccinations.
Family supports COVID vaccines
Robyn's four children, Kris, Kate, Jo and Ross, are all vaccinated and fully support the COVID-19 vaccine rollout.
"I know the odds are very small and I believe in the vaccination program," Ross said.
They are sharing their story because they feel like the state and federal governments have "completely failed" their family.
"Mum did what they asked, she believed in the government and that they were doing the right thing for the country," Jo said.
"She did it, and she died, and the [government] have just shrugged their shoulders."
Kate feels like they are "collateral damage".
"They knew that some people were going to get sick and die," she said.
"They should have had a plan to take care of those people."
Calls for government to provide better support
The thing the family most wanted was a single point of contact from the federal and state health departments asking, "do you need anything?".
When her mother was sick and after she died, Kate made dozens of phone calls to the coronavirus hotline, federal and state health departments, and politicians trying to advocate for her family.
"It meant that I had to relive the trauma over and over again," Kate said.
Kate said they had to fight to visit their mum in hospital.
They had to fight for her sister Kris to get an MRNA vaccine for her second dose – she had AstraZeneca for her first dose but didn't want it again after what happened to her mum.
They had to figure out how to get Ross over from Tasmania to see Robyn before she died.
They had to take weeks off work and independently seek out mental health support.
"I wanted a social worker or case manager, so I could tell one person one thing once, and then they could tell everybody else and give us the help that we needed, but that never happened," Kate said.
In a statement, a spokesperson for federal Health Minister Greg Hunt said the loss of any family member was a "tragedy".
"The minister has asked that a senior health official contact the family to offer further support and to ensure Services Australia has the information required to administer the claim," the statement said.
A Victorian government spokesperson gave their "heartfelt sympathies" to Robyn's family and friends.
"Our dedicated health services are trained to support individuals in need of clinical care following an adverse event and help families following death — including through bereavement care, counselling and culturally specific support information," the Victorian government spokesperson said.
Compensation scheme 'callous', complicated
The family are yet to apply for compensation through the COVID-19 Vaccine Claims Scheme.
Kate said a federal health department official has offered to put them in touch with someone from Services Australia who could help them fill out the form three times, but no help has been forthcoming.
They said they believed they were entitled to a lump sum payment of $70,680 plus funeral expenses, but they have questions about how the scheme works.
"As it reads it feels like pain and suffering for someone who died is not valued," Ross said.
Reading through the COVID-19 Vaccine Claims Scheme policy as someone whose relative has died, Ross says it feels very callous.
"It's a policy that's designed to protect medical professionals from legal repercussions if something happens like to my mother … my understanding is that it is to facilitate the actual vaccine rollout, so the doctors aren't scared to administer vaccines," Ross said.
Services Australia said they were unable to initiate contact with the family of someone who had died until the family provided consent.
"In the case of a claim involving death, we provide a single point of contact for families to ensure these claims are managed expeditiously and sensitively," a Services Australia spokesperson said.
Mum's life 'sacrificed' for greater good
Nine months on from their mother's death the family are still struggling to come to terms with what has happened.
"It just felt so unjust," Ross said.
"She did nothing to deserve this … she went and got vaccinated for her own benefit, but also because that was the right thing to do for the greater Australian community."
The family home has been cleaned up and is on the market, while Kris (who lived with Robyn) is looking for a new place to live with her mother's three cats.
By speaking publicly, they hope other families who find themselves in a similar situation in the future are better supported.
"I'd like them to be approaching all the people who had a severe adverse reactions and finding out what they need."
