As soon as Rye was born, life threw him many challenges. This week, he passed away aged 11.

11 years ago, Rye Johnson came into the world. His parents – Brooke and Rhys – were elated, and later welcomed two other children, Jed and Bowie. 

But as soon as Rye was born, life threw many challenges his way.

When he was delivered, medical staff discovered that little Rye had suffered a stroke in utero. By the time he was six months old, Rye was diagnosed with cerebral palsy. Although it was a steep learning curve for the whole family, the Johnsons took it in their stride. But when Rye was around two and a half years old, his parents started noticing setbacks in his development. And from that moment on, Rye regressed. 

Sadly doctors have never able to find an official diagnosis based on Rye's regression, which includes the loss of motor skills. It led little Rye to have severe physical and intellectual disabilities, along with behavioural impairment. 

And over the past decade, Brooke, Rhys and their family – including comedian and children's entertainer Jimmy Rees who is Rye's uncle – have been working towards making life as comfortable for Rye as possible. 

They also documented his story and health via an Instagram page 'Rye's World', shedding light on the realities sick children and their parents/full-time caregivers go through. 

This week, Brooke and Rhys announced that 11-year-old Rye had passed away. 

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Although they feel relieved that Rye is no longer in pain, there will forever be grief over the loss of their son.

For years, Rye's parents watched on helplessly as their son's condition deteriorated.

He eventually was 100 per cent dependent on other people – whether it be for his health, daily activities, eating, going to the toilet, mobility, personal care or communication. Rye was also tube fed, struggled to breathe on his own and required numerous medications throughout the day. 

Of course, even in the challenging times, Rye brought lots of smiles to his loved ones around him.

As Brooke wrote on Instagram: "We have had many challenges and hard times. Rye has had lots of happy times as well. He has a way of making everyone around him smile. He makes us all appreciate life and see the good in everyone. He teaches us all how to live in the moment and to be grateful for what we have in life!"

Nearing the end of 2021, Rye's health took a turn. 

"This life is tough, but Rye is tougher. Sometimes we just wish it could be a little easier for him," Brooke said at the time following Rye's health update.

In July 2022, Brooke and Rhys shared the news that Rye would be going into palliative care. 

"Over the past couple of months in hospital, we have had some really tough conversations. It has now become obvious that this is his new baseline, and one that will unlikely change back to his previous state, regardless of how much we try," they wrote.

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A post shared by Rye’s World (@ryesworld_)

"Palliative care are now actively involved in Rye's care. We are working on quality of life and giving Rye the absolute best. He is loving his time in bed watching cartoons. He is still kicking his legs, smiling and being his cheeky self. He is just more tired."

Speaking about the reasoning behind sharing their family's story, Brooke said that her hope was that it would make other families with sick children feel less alone.

With around 10,000 people following Rye's story via Instagram, it was clear that many were deeply attached to Rye, with lots of donations towards the family.

On Sunday, Brooke and Rhys confirmed that Rye had passed away peacefully with his loved ones by his side. They also took the time to thank the Royal Children's Hospital for all their work over the past decade. 

"Our beautiful Rye-man grew his wings today. Our hearts are breaking and we can't explain how much we love you Rye-man. Your strengths will live on through your little brother and sister. Fly high and pain-free," Brooke wrote.

Rhys said: "My heart is completely broken. My little boy passed earlier today in the arms of his mum and me. We sat staring at him for 24 hours remembering everything he has done for us. He had a great life but a tough life. I know your at ease Rye-man and I have to concentrate on that. I love you so much, buddy."

Rye's uncle Jimmy Rees commemorated his nephew in an Instagram post. 

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A post shared by Jimmy Rees (@jimmyrees_)

"Yesterday my nephew Rye passed away with his parents by his side. Some of you may have been following Rye's journey on his page @ryesworld_. We love you Rye," he said. 

"May you Rest In Peace, pain-free. What an incredible life of resilience, courage and strength. The mark you have left on us all will remain forever in our hearts. Uncle Jimmy will see you again soon buddy."

In 2019, Jimmy spoke about his relationship with his nephew.

"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," he said to Very Special Kids.

"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."

When Jimmy was on Dancing With The Stars, he chose Very Special Kids as his charity partner.

"It's an amazing charity and is close to my family and close to my heart," he said.

As Brooke and Rhys wrote on Monday: "24 hours since feeling your heart beat: We love you Rye-man, we are broken, but as we promised, we will be ok together. We know you will be watching over us always."

Feature Image: Instagram @ryesworld_.