Just before her 6th birthday, Ariana began to break out in unexplained bruises and her parents and teachers were baffled. The bruises would come up from nowhere, and made the smallest of knocks look like the most serious of accidents.
Following some routine blood tests, Ariana was referred to the closest children's hospital, over three hours away from home in Canberra, for a bone marrow biopsy.
Shockingly, Ariana was diagnosed with moderate aplastic anemia meaning her body's ability to produce new blood cells was compromised. Ariana's parents Rebecca and Michael were told that her condition would likely either improve without the need for intervention, or worsen to life threatening severe aplastic anaemia.
What was to follow would push the young family to their absolute limit.
Ariana (second from left) with her family before her diagnosis
A couple of months after receiving her initial diagnosis, they received the news they had been dreading. Ariana’s condition had deteriorated from moderate to severe. This meant she would become blood transfusion dependent and a bone marrow transplant was the best chance to save her life.
Just minutes after beginning her first blood transfusion, Ariana suffered a severe reaction causing her oxygen to drop, and her lungs to go into distress.
"She's had over 100 transfusions since, but we nearly lost her with her first ever one. It was such a shocking experience," recalls Rebecca.
Ariana spent a week in hospital as her lungs recovered.
Against the backdrop of lockdowns and border closures, the family travelled to Sydney as they prepared for Ariana’s bone marrow transplant. Her four-year-old brother Sullivan was a match, and was cleared to donate his bone marrow to his sister. As parents, it was a daunting time, but Rebecca and Michael had little choice but to forge ahead.
Sadly, their plans would take another unexpected turn that would throw them into chaos. Ariana’s central venous line, needed for the transplant, became infected. She was airlifted by emergency helicopter back to Sydney in a critical condition and placed under heavy sedation to remove the line. This time, Ariana spent two weeks recovering from sepsis, causing her transplant to be delayed as she rebuilt her strength.
Once back home, Ariana's ordeal continued. Her body began to reject the blood transfusions. She was immediately transferred back to hospital and plans to proceed with the transplant were expedited.
Ariana and Rebecca returned to Sydney to undertake an intense course of chemotherapy to prepare for transplant. Michael and Sullivan followed a week later for the bone marrow harvesting procedure while her other brother Alex remained in Canberra.
Thankfully, Sullivan bounced back quickly from his procedure and Michael and Sullivan headed home. Rebecca and Ariana remained in hospital, spending more than a month isolated in the transplant room. Upon discharge, Ariana was expecting to remain in Sydney for 100 days at nearby accommodation.
Sadly, within days of discharge, Ariana and Rebecca made a fearful walk back to hospital with what would later reveal multiple life threatening post-transplant complications. Ariana remained in hospital isolation for a further 4 months as she battled for her life. When Ariana was eventually discharged from hospital, she spent a further four months living in isolation in accommodation close to the hospital.
When Ariana's condition deteriorated, the rest of the family relocated to Sydney to be closer to her and Rebecca. Alex attended hospital school, and Sullivan attended a local daycare to try to keep the family together and meet the needs of the whole family. Sadly, they still could not visit Ariana due to her need to be in protective isolation. After three months, Michael and the boys returned home at the beginning of a period of covid lockdown in Sydney.
Due to lockdown and Ariana's extreme vulnerability, Ariana was completely shut off from the outside world. As well as being separated from family and friends, she was unable even to have contact with other kids on her ward.
Throughout her period of treatment, the Captain Starlights were the only non-medical people Ariana saw.
"It would have been a very different year for us without Starlight at Sydney Children's Hospital," says Michael.
Captain Starlight's visits to Ariana's ward were the highlight of her day. She loved to interact with the Captains (even when she was too weak to say so), and earned her very own Captain name, Captain DJ!
When the Captains were not in her room, Starlight TV provided Ariana's only contact with the outside world. Ariana even became a quizmaster, participating in the daily Starlight quizzes when well enough and enjoyed the daily Starlight Crafternoon.
Aware of how badly being cooped up in her hospital room was affecting Ariana's mental health, Captain Starlight set to work and turned her room into her very own princess castle (painting a castle mural on her hospital room door).
Whilst Alex and Sullivan were there, the Starlight Express Room provided them with a home away from home. They spent every lunchtime there, forming their love of Minecraft! Alex even celebrated his birthday with the Captains, and Sullivan received a bravery award for his bone marrow donation.
It was a huge day for Ariana when she was finally able to set foot in the Starlight Express Room herself, 11 months after her transplant.
Visiting the Captains was proof of how far she had come since she was first admitted.
The ultimate reward for Ariana? Receiving her own Starlight Wish!
Ariana and her family travelled to the Gold Coast to take on the thrill of the theme parks, VIP style! It was the perfect wish for the whole family, with the family able to reconnect and form incredible lifelong memories after their year of separation.
To those who support Starlight, Michael and Rebecca have this heartfelt message;
"We will forever be indebted to Starlight for the support they provided not just Ariana but the whole family. For all that time, they were our own hospital family. They helped Ariana smile when we couldn't, we just can’t stress how important the Captains are to families like ours."
