Jimmy Rees’ nephew’s future is unknown
Very Special Kids Ambassador Jimmy Rees has been dancing his way into our lounge rooms appearing on Network Ten’s Dancing With The Stars.
But there’s more to Jimmy’s story that viewers may not be aware of. Although learning a new dance every week can be challenging, Jimmy and his family have faced far greater challenges with his seven-year-old nephew Rye battling a life-threatening condition.
“Rye was the first nephew on both sides of our family. Everyone was overjoyed when he was born.”
But the birth didn’t go to plan and parents, Brooke and Rhys were told their little boy had suffered a stroke in utero.
“It was just heartbreaking to hear. I can’t imagine what they went through, it brings a tear to my eye. Rye had a real difficult start to life and it was tough for everyone.”
Six months after being born Rye was diagnosed with cerebral palsy and other health issues. Rye’s ability to speak was questioned and he began using Key Word Sign and a speech device.
“He was great with sign language and would name people by their features. Because I would be silly around him and pick my nose, every time he would see me he would tap his nose! We had a lot of fun together and I love making him smile.”
But over the last few years Rye has been regressing and losing skills he once had.
“The hardest thing was to see how well he was progressing and then the regression started. He stopped talking, he stopped using sign language, he lost interest in playing with toys and interacting the way he once did. It’s devastating.”
Rye also has an Intellectual Disability and cognitive impairment, and although there was a stage where it seemed as though he was on par with other kids his age, he has now regressed to the cognitive level of a newborn.
Rye’s day to day life is very different from other seven year old kids. He requires 24 hour care and assistance with all his personal and medical needs.
Despite the many tests conducted, Rye’s regression remains undiagnosed and his future is unknown.
Becoming a father himself, Jimmy recognises his perspective has certainly shifted.
“Watching Rye change so much has been really difficult, and the emotion has definitely heightened now having kids of my own. You wouldn’t wish that on any child or family.”
To help them cope with the challenges, Rye’s family turned to Very Special Kids for emotional support and respite at our children’s hospice. Rye comes to stay and is cared for by a team of nurses and carers, whilst his parents can have a much needed break.
“Very Special Kids plays such an important role in supporting their family and helping Brooke and Rhys cope with the challenges, as well as enhancing Rye’s life.”
When given the opportunity to select a charity partner for Dancing With The Stars, Jimmy said “Very Special Kids was a no brainer due to my personal connection. It’s an amazing charity and is close to my family and close to my heart.”
To support Jimmy and keep him in the Dancing With The Stars competition, you can vote online here.
Categories: Family News, Fundraising News, Very Special Kids News