Eleven-year-old Ari is described by his mum as a polite, caring and loveable soul.
He’s an artistic and creative young man who loves his music, drawing, Lego, Minecraft and other adventure video games. Before he became unwell, he was learning to play the guitar.
When Ari was nine, however, he started to experience pains in his side. Doctors weren’t sure what was causing them, but following a family holiday where Ari became increasingly tired and showed other signs of illness, parents Maria and Peter took him back for another assessment.
“Ari became tired all the time. It was hard for him to walk even for a short period of time, and he even vomited walking approx. 20 meters up a slight incline. He had bruises we couldn’t explain as he was so inactive. Eventually he developed a rash over his neck and face, so we took him to the Emergency Department to get some answers” says Peter.
The diagnosis that followed would stun Maria and Peter to their core.
“When Ari was diagnosed with Leukemia, we went into shock for hours” recalls Maria. “We were completely distraught and couldn't speak to each other at all for the longest time as we both tried to digest the news.”
From that moment, life changed dramatically for the family. Maria had to give up work to become a full-time carer and when Ari wasn’t an inpatient at the hospital, they would drive there 2–3 times per week for appointments.
As soon as he was diagnosed, Ari began an intensive course of medication. This included 14 months of chemotherapy, and a further 10 months of maintenance treatment. In total, Ari spent around 5 months as an inpatient undergoing painful and debilitating treatments for his cancer.
For Ari, his illness and treatment took an enormous toll. He had to become used to doctors and nurses poking and prodding him, developing a great deal of fear and anxiety from this lack of control over his own body.
Mum Maria says the very hardest part of his Leukemia for Ari, is taking his medication.
“It took him over six months to stop vomiting or dry retching or having anxiety attacks just looking at, thinking of, or smelling the medication he had to take” she says.
Friendships and other fun activities such as his guitar lessons and even just playing in the park have had to be put on hold. Even his 10th and 11th birthdays were spent in hospital.
Maria says while Ari could often be anxious and miserable as he underwent his treatments, there was one shining light that has kept him going.
Who could that be? Captain Starlight of course!!
“Starlight has been a godsend!” she says. “Captain Starlight and the Starlight Express Room are the only things that make the hospital enjoyable, and without them this whole experience would have been virtually unbearable for Ari. He LOVES the Captains and his banter with them, the games, the quizzes and of course the prizes.”
In fact, instead of crying or feeling anxious before coming to the hospital, Ari now looks for things from his bedroom to take in to show Captain Starlight, and make a big impression!
While Captain Starlight has made the world of difference for Ari, Maria and Peter both believe they too have been spared an enormous amount of stress thanks to Ari viewing hospital as somewhere he is somewhat happy to be.
“I cannot emphasise how much Starlight has helped, and is helping, my son get through his Leukemia treatment.” says Maria. “Thank you to everyone who supports Starlight to help make that happen.”
