Nine-and-a-half-year-old Ivan was a happy and healthy boy. Like so many other kids his age, Ivan loved Harry Potter, LEGO, playing soccer and hanging out at the skate park with his mates.
The very last thing Ivan’s mum Enya ever expected to witness was her son in cardiac arrest. Yet that is exactly what happened when Ivan suddenly had a heart attack as he played video games at home.
Ivan would suffer a total of four cardiac arrests within the space of two hours that night, with Enya forced to perform CPR on her son while waiting for the ambulance to arrive.
“As Ivan was rushed into open heart surgery, I couldn’t believe this was my little boy who had just been running around on a soccer field and playing PlayStation hours before” recalls Enya.
During this frantic time Ivan’s brain was deprived of oxygen and his body began to shut down leaving him with an extensive acquired brain injury.
Ivan spent close to three months in the ICU before his heart was strong enough for him to be taken off the machines that had kept his heart and lungs working, and brought out of his coma.
From the ICU, Ivan was transferred to a ward where he underwent kidney dialysis, before he was well enough to begin trialling rehabilitation.
It was at this point Enya received the devastating news that Ivan was non-verbal, blind, and had lost all mobility.
While it was unclear whether Ivan could hear or understand her, Enya made the hospital her home for the next eight months. She stayed with Ivan around the clock, playing music to him and manually moving his limbs, trying to trigger any form of response.
Slowly, over time, Ivan began to show small but exciting signs of improvement. With a great deal of work and perseverance, the movement of a finger turned into limited full-body movement…and being able to rock along to his favourite artist, Taylor Swift!
Eventually, Ivan regained the ability to hear and respond. Enya worked with him every day to help improve his quality of life, holding onto hope that one day he would be able to transition home.
Throughout their ordeal, Enya has been thankful to have had another special person on their team.
Since he was first transferred to the wards, Captain Starlight has been by Ivan’s side helping to bring a smile to his face. For Enya, it has been a wonderful support to have someone else dedicated to Ivan’s happiness, as he has learned to live with his new reality.
“Captain Starlight really helped to lift Ivan’s spirits,” says Enya. “They helped him smile, a smile I hadn’t seen in six months!”
Spending so much time in hospital, Ivan and the Captains have become great friends. When Ivan was low, Enya knew she could call on the Captains to visit the ward and deliver the fun and laughter he needed in his day.
Enya says “The Captains took the time to learn what Ivan loves and always came prepared with jokes, games, and stories. They even held a fashion parade, explaining every outfit in detail because Ivan is vision-impaired”
It didn’t take long to figure out the Collingwood Magpies theme song was a surefire way to lift Ivan’s spirits, and the Captains would play it to him often with their ukuleles and bells.
When he was able, Ivan loved to visit the Starlight Express Room. It was a great escape from all the medical equipment and the doctors visiting around the clock, and a place Ivan knew was just for fun. Enya says visiting the Starlight Express Room brought Ivan a sense of joy in not feeling “different” as he was able to join in with all the other kids.
The Starlight Express Room offered a sanctuary where Enya knew Ivan was happy, whether it be amongst the PlayStations, the big screen TV, or just hearing the laughter and voices of other kids. For Enya herself it became a place of joy to see her son light up with happiness, and offered the opportunity to have a bit of downtime and to decompress at the end of the day.
When Ivan wasn’t with the Captains, he LOVED to have Starlight TV playing all day and would request his favourite movies and listen out for his favourite Captains on the TV screen!
“As a parent, Starlight is priceless,” says Enya. “They just create so much positivity, laughter and love that Ivan was able to take on board and lift his spirits up”. She continues “I’m beyond grateful to Starlight for providing a group of people and a place who treat my child as a child, supporting him and bringing him so much happiness. Thank you!
