Kobi’s spirit shines through

28 October 2022

Kobi laying in the sun

Expected time to read: 2 minutes

Kobi has a smile and inner strength that lifts his mum, Ella's spirits on the toughest days. She is so grateful a place like Bear Cottage exists. 

Shortly after Kobi was born, he turned blue and the life Ella hoped for her newborn baby boy started to feel more and more out of reach. Kobi spent the first year of his life at The Children’s Hospital at Westmead, where he was treated for feeding difficulties, breathing problems and then cardiac arrests.  

Despite countless tests and genetic sequencing, to this day, Kobi’s condition remains a mystery. Now 12 years old, he can’t speak, swallow, eat, sit, stand or walk and breathes with the help of a tube inserted into his next called a tracheostomy. 

Due to his high medical needs, Kobi will need round-the-clock care for the rest of his life.  

Kobi and his mum

Kobi has every reason to be frustrated. Yet despite his challenges he lives with a calm, joyful and gentle spirit. “Kobi is a superhero,” says Ella. “Despite all his limitations he is the most beautiful boy, he is strong, and he is happy. He can make you feel pure love.” 

Kobi’s family found it very difficult to find a support group to connect with others like them. “It was very hard to find a place to fit in,” says Ella.  

But when Kobi was three, all than changes. His family was invited to stay at Bear Cottage, the only children’s hospice in NSW. At first, Ella was sceptical. “I thought it would be a sombre place,” she says. “…but how wrong was I!” 

The focus is always on building Kobi’s strengths – not on his limitations. “At Bear Cottage, the team treat Kobi as the amazing little dude he is,” says Ella.  

“The opportunity to connect with other mothers at Bear Cottage’s bootcamps are so special. I still remember my first trip – it was the first time I felt like an ordinary mum, surrounded by strong women going through unique but similar journeys and I’ve made lifelong friends,” recalls Ella. 

Ella wants you to know how important Bear Cottage is: a place of love and fun, where parents like her can celebrate their children with life-limiting conditions. “When you support Bear Cottage, you are giving kids like Kobi the chance to experience new things and allowing us to re-energise, so we can continue to be the best carers possible.”

Kobi and his dad

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