Nine year old Joshua was born with a rare genetic disorder, spondyloepiphyseal dysplasia congenita.
This means his spine, bones and connective tissue don’t grow as well as others.
For six weeks he required casts from the tips of his toes to the top of his thighs. Credit: Supplied by family
While Joshua needs assistance with most aspects of his daily life, he has an amazing team of support workers, medical and allied health specialists and his mum, dad and siblings that help him have the best quality life that he can.
Joshua shares an incredibly close bond with his two brothers. He enjoys kicking the footy, reading books, drawing, and riding his bike.
Despite his challenges, Joshua is described as a resilient, loving member of the family. Credit: Supplied by family
Michelle was just 20 weeks pregnant when she was told her unborn son Joshua’s long bones weren’t growing properly. Michelle remembers feeling scared and overwhelmed at the time “No one had any answers or insights or even knew what would happen once Joshua was born.”
At two weeks old Joshua had serial casts put on both legs. Credit: Supplied by family
Life changed so much for the family. At two weeks old Joshua had serial casts put on both legs, and for the next six weeks required casts from the tips of his toes to the top of his thighs. His little feet were pulled and stretched and at just seven weeks old he had his first operation for his clubbed feet. Joshua then proceeded with clubfoot treatment for the next four years.
Joshua uses his wheelchair for long distances and requires assistance on a number of daily tasks including turning on lights, opening doors, climbing into the car, sitting at a table, washing his hands and using the bathroom.
Joshua is a resilient and generally happy boy who has endured a lot in his young life. Credit: Supplied by family
Joshua gets frustrated when things are out of his reach and he has his days when he doesn’t want to go to his appointments or attend his therapy sessions. He just wants to be a kid and enjoy life playing outside. Michelle says, “We’ve spent countless hours in hospital waiting rooms.”
Joshua enjoys kicking the footy, reading books, drawing, and riding his bike. Credit: Supplied by family
Michelle is very grateful for the opportunity to access therapies and support through Telethon-funded programs with Kalparrin and Kite’s Children’s Therapy and in-hospital care at Perth Children’s Hospital.
“Thank you so much for your generosity over all these years. Your continued support means so much to kids living with disabilities and their families.” You can help support life-changing research and care for the 63,000 WA kids like Joshua who have a rare disease.
You can donate today at telethon7.com/donate