“He has a zest for life,” his mother Kristie Duck says, reflecting on her son’s rollercoaster life to date.
The St John Vianney Primary School student had his life turned upside down when, aged five, he went to bed with a sniffly nose only to wake the next day, paralysed and struggling to breathe.
Soon afterwards, Kobe was diagnosed with an incredibly rare disease, acute flaccid myelitis, which affects his ability to speak, eat, breathe, and swallow. It also affects the movement in his arms and the muscles that support his back.
The diagnosis completely changed his life.
Kobe became dependent on his mother. She was the only individual who could communicate with him through lip reading in those 18 months he was non-verbal.
“It was really hard for him,” Kristie says. “The breakdown in his relationships due to his inability to speak meant he was often overlooked.”
The COVID-19 pandemic intensified this feeling of isolation, with the entire Duck family having to adjust their way of life for an extended period to ensure Kobe’s compromised immune system was not placed in further jeopardy.
Their family abode was instantly transformed into an at-home rehabilitation centre, with his therapy sessions conducted via Zoom. Kobe’s father, Michael, stopped working from Sydney. Meanwhile, Kobe and his siblings quickly transitioned to learning from home. The only time the family left the house was to attend essential hospital appointments or collect groceries.
Sustaining Kobe during this challenging time were small gifts, letters, and challenges he received from the Make-A-Wish Foundation. They were consolation for having to postpone his ultimate wish of having the opportunity to “live like a Youtuber in a mansion”.
“News that his wish to stay in a mansion had to be postponed was deflating for Kobe,” Kristie says. “But the Make-A-Wish Foundation, through its constant flow of kindness, kept the excitement in the household up while we were in isolation.”
Now, three years on from that fateful evening and, on the other side of the pandemic restrictions, things are starting to look up for the youngster. He and
his family recently made their way to a mansion in Clarence Town for a short stay, courtesy of Make-A-Wish Foundation.
“Amazing.” “Relaxing.” “Joyous.” “Fun.” “A disconnect.”
Words that come to mind when Kristie reflects on the quality family time the Ducks were able to enjoy together at the country estate.
“They [the kids] were just happy,” she says. “We switched off from what was happening in the outside world. We did not think about hospital visits or therapies. The focus was wholly and solely on having fun and spending time together as a family.”
Back home, it is the little things that many take for granted, that are providing Kobe with the most joy.
“It’s amazing to see him rebuild bonds with his siblings and classmates,” Kristie says. “Slowly but surely his speech is coming back and he can once again have those special little conversations without relying on me. It’s like his whole world has come back together.”
Helping Kobe find his feet and use his voice is the St John Vianney Primary School community. From adjusting classroom spaces and fundraising, providing Kobe with extra time to complete tasks, to understanding not every morning will be the same, no request is too big or too small.
“Despite missing almost a year of education, Kobe has made great gains,” school principal Simon Devlin says. “He has grown academically, he loves to draw, build and create, be surrounded by his friends and being active.”
Mr Devlin says since Kobe’s return to the school in 2019, he has served as an inspiration for many others.
“Kobe wants to be involved and he is determined to make sure it happens,” Mr Devlin says.
“At the athletics carnival he told us he wanted to run without support. In the 200m race we placed him 20m out from the finish line so he could be part of the experience with his peers. It was a heart-warming moment to see him achieve
Through rehab, Kobe’s potential continues to be nurtured. Attending once a week, Kobe and his medical team continually set new targets, from gaining his voice back to now developing his ability to swallow larger volumes of liquid.
“We don’t know where the journey is headed,” Kristie says. “We take each day as it comes, embrace every experience and opportunity that is presented to us and have fun along the way.
“We’ve got lots of life to live.”