In July 2022, 16-year-old Aoife Johnston was on holiday in Spain with her two parents. While there, she got her first tattoo: an infinity sign and rose to represent her nanny who had died almost two years earlier.
Her 25-year-old sister Kate couldn’t believe her parents had let her, saying she “got away with so much more” than she and their other sister, Meagan (27), did when they were the same age.
“I rang the pair of them [mam and dad] because I didn’t believe she was allowed. I thought it was just henna,” she says with a laugh.
There is a certain beauty now, they say, in her tattoo being the infinity symbol. Aoife might be gone physically, but she will live on with them forever, as will her legacy and impact.
Aoife, from Shannon in Co Clare, died of meningitis on December 19th, 2022, at University Hospital Limerick (UHL), after she was left for more than 13 hours without antibiotics, a “vital” treatment to help save her life.
Her death attracted significant public attention, particularly in relation to the conditions in the midwest hospital.
A report by the former chief Justice Frank Clarke found the hospital’s emergency department (ED) was “significantly understaffed” and had an “inadequate” and “ad hoc” system to escalate concerns about patients’ conditions deteriorating at the time. Her death, he said, was “almost certainly avoidable”.
But now the family has been dealt another blow: last summer James, Aoife’s father, was diagnosed with stage four kidney cancer, which has since spread elsewhere in his body.
He is undergoing treatment but was admitted to UHL again this week, due to feeling acutely unwell.
“I 100 per cent say it is the stress of everything that happened with Aoife that brought this on,” Kate says.
Their mother Carol said the trauma of the family’s “fight for justice” has “taken a toll on his physical health. He’s really deteriorated”, and being treated in the hospital in which Aoife died compounds that difficulty.
“It is hard because that’s an environment that took so much away from us. He’s in a different section [of the hospital] and his oncologist is really great. But it does bring back tough memories,” Carol adds.
Despite the severity of his illness, his focus remains on Aoife. “He wants justice for Aoife just as much as us, even though he is unwell. He always wants us to do everything we can for Aoife,” Carol says.
Though Aoife can no longer talk to them, the family still talk to her – particularly in times of need.
“I do be talking to her, begging her to make sure my dad will be okay,” Kate says.
When Kate was taking her driving test, James stayed at Aoife’s grave asking her to help her sister. Laughing at the memory, Carol said she also kept repeating: “please Aoife, please can you guide us to pass her test because I can’t be listening to her.”
It is no wonder they speak to her in moments of difficulty. Aoife was kind and caring, they say, and wanted to pursue social care after school.
“The amount of stories we heard when she died. Like, we knew Aoife was caring but we heard how she would stick up for people, and how she would defend them. She was like a peacemaker really,” Kate says.
It is clear from speaking to her loved ones that Aoife was the quintessential baby of the family. They often called her the “princess”, a nickname that, her mother says, she loved or loathed depending on the day.
Her absence is palpable. She would lie in bed, her room lit up by colourful LED light strips, as she scrolled on social media. A typical teenager.
The family would always know when she was awake: she would blare music – almost always dance songs – while she was doing her make-up in the mornings.
But now, the house is quieter. Her bedroom door remains locked; the room untouched since her death.
As is the case in every family, Aoife had her specific role. With her sister Kate, she loved to gossip and Kate would do her eyelashes. She was a “daddy’s girl”, and was constantly asking her mother for money or requesting Doritos or treats in the shopping.
Fashion was the unifying force between the youngest and eldest daughters. One of Meagan’s most cherished memories of her youngest sister is a shopping trip after one Christmas.
“We got the bus together, and we went to the Crescent [shopping centre]. She helped me pick out River Island jeans. She had her own money, Christmas money, but I still said ‘No, Aoife, I’ll get it for you'. Then we went and got a Subway together going back home. She was my little sister. It was just a girlie, shopping day,” she recalls, smiling.
At her graveside recently, Meagan said she continued to talk to her late sister about their shared interests and a holiday she had booked.
“I was ordering stuff from [fashion site] Shein, and was talking to her about the things I was ordering. And I was just talking out loud and I was like ‘imagine me and you went on holidays together, imagine what that would’ve been like'.”
In the years before her death, Aoife became much more confident and had a big circle of friends. This sociability meant she always wanted to be out. The fact she was willing to go and stay in the hospital in December 2022 was a clear indication to her family about how poorly she was feeling.
In the first few hours, she was still texting her sister and friends. She was showing her mother potential graduation dress options online. The family decided they wouldn’t celebrate Christmas until Aoife had been released from hospital so they could all celebrate it together.
“I never thought she was going to die. Even when she was in ICU or put in an induced coma, I never thought she was going to die,” Carol says.
Her death being so close to Christmas means the family no longer put up a Christmas tree. For her funeral, they used the presents she was due to get on December 25th: her sister Kate applied her new make-up to her face and she wore clothes purchased by her parents.
Time has moved on, but in so many ways, the family says life has frozen in place. “We get up everyday, but we’re not living any more,” Carol says.
Aoife’s friends are now adults. Aoife would be turning 19 in March, being one of the youngest in the friend group.
When her sisters see those friends out in the local pub, they have to do a double take. “In my head they’re still 16 because Aoife is still 16,” Kate says.
Carol nods. “She’s missed out on so much. She should be doing the same thing.”
The public attention given to her death has provided an unexpected sense of solidarity. Envelopes addressed to the “family of Aoife Johnston” and sent only to “Shannon, Co Clare” find their way to their door. The letters are from strangers all over the country, offering their condolences and support to the family.
In one instance, a local artist drew a portrait of Aoife, and sent it to them, which they just had framed. The sketch was unsigned, and they have no idea who provided them with a gift they now hold so dearly.
The increased awareness around sepsis risk is another legacy of Aoife of which they are proud.
All of these things have bolstered them in their pursuit of a statutory inquiry, which they are calling on the new Government to carry out.
Following the publication of the Clarke report, the HSE announced six people were undergoing disciplinary proceedings. But the family says this is not enough.
“There has still been no accountability. We still need more answers,” Carol says. “I don’t care how long it will take, our lives are ruined anyway. A 16-year-old cannot go into hospital and die and everyone just carries on.”
One of the first stories that came to their minds when they spoke of Aoife was the tattoo she received a few months before her death.
Now, all four of them have their own tattoos in her memory. This, Carol says, is “so we always have a piece of her with us”.
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