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Shannon soldiers on and looks to the future

Published 22nd February, 2019
Not even a near-death experience can hold 14 year-old Shannon Stobie back from doing the things he wants to do in life.  

The cheeky teenager was born with a rare, life threatening condition called asphyxiating thoracic dystrophy, also known as Jeune syndrome, which affects the way his bones and cartilage develop.  

Shannon needs 24 hour care and uses a ventilator to help him breathe, as well as a suction device to clear his airway. He also has scoliosis, which puts further pressure on his small lungs. 

But like his Mum Samantha, Shannon has fighting spirit and has never let condition get in the way.  

“He will give absolutely anything a go. He doesn’t let anything hold him back and just gets on with things,” Samantha said.  

“He still wanted to go to the school Christmas party after a terrifying incident in December that nearly took his life. He said he was fine and ended up coming along and helping me in the restaurant.” 

“All the customers loved him and said he did a great job. He even scored a $20 tip off one man and since then he’s wanted to work with me in the kitchen.” 

Getting a job is now one of the goals in Shannon’s NDIS Plan and Therapy Focus Physiotherapist, Brianna Rapson, is supporting Shannon to achieve this goal, in addition to sourcing him a new powered wheelchair.  

“Right now I’m helping Shannon develop the skills he needs to become job-ready, such as social skills, time management, money handling and budgeting,” Brianna said

“His new wheelchair has a high-low functioning, which will allow him to raise or lower himself as needed, helping him reach things and serve customers if needed.” 

The Stobie family and their friends are now raising money to purchase a modified van that is large enough to fit Shannon’s new wheelchair and room for someone to sit beside him.  

Samantha said that the proceeds from fundraising events held at The Almighty Lesmurdie Kitchen, music gigs and raffles were going towards the $47,000 modified van that Shannon needs to transport him safely.  

To find out more about future fundraising events, contact Samantha Stobie on 0403 763 460 or email

A boy in a wheelchair laughing with a girl standing beside him

Pictured: Shannon (right) with his sister Kellyanne (left).

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