Meet the inspirational Luton boy proving courage has no limits
A Luton boy who has undergone mutliple surgeries and spent much of his early life in hospital is now inspiring everyone he meets with his courage and determination.
Cayden Mbui is just like any other 10-year-old: he likes to laugh, run around and play with his brother.
And having an ultra-rare genetic condition doesn’t stop him from being a magnet for positivity.
His mum, Michelle-Selina Kamau, describes him as “the happiest, cheekiest little boy”.
She said: “He’s so brave because he’s been through a lot in his life.”
He is a familiar face, especially within Luton’s Kenyan community. But he is known for his personality, rather than his condition.
Michelle-Selina said: “There’s just something about Caden that draws people to him.”
Cayden, who will turn 11 in September, was born at the Luton and Dunstable Hospital.
At her 20-week scan, his mum was told about complications with her unborn baby, and was told about an undeveloped jaw.
Around five weeks before his due date, Michelle-Selina was rushed to hospital where doctors discovered her placenta had stopped working.
Caden was delivered by emergency Caesarean section after his heartbeat disappeared.
His mum explained: “Caden was born without a lower jaw. His tongue does not have support. His tongue flops inside his throat, making it impossible for him to breathe.”
At just three months old, he was given a tracheostomy (a pipe in his throat), something he still has today.
His mum said: “I did not even know what a tracheostomy was before. We all had to learn tracheostomy care before they could discharge him.”
For more than a year, Cayden and his family lived at the hospital and at Great Ormond Street in London.
During this time, he was visited by scores of doctors, consultants, and researchers who assessed his condition, including the deformities to his feet.
Finally, the family were told about Cayden’s rare genetic condition – Richieri-Costa syndrome.
Michelle-Selina said: “Apparently, he’s the only child like that in the UK with this condition. The only known people who have this condition are in some remote village in Brazil.”
It was while studying to be a nurse that his mum read about her own child in a medical journal, detailing his experience with tracheostomies.
In his life, the boy has undergone multiple surgeries, including on his feet.
The most recent was a few months ago when surgeons tried to fix his jaw during a 12-hour operation.
Michelle-Selina explained: “We had been waiting for years for them to construct the chin that’s been missing. They took a bone from his leg and constructed a jaw for him.
“Up to then, Caden had been to theatre almost 16 times.”
If the surgery is successful, his tube will be taken out.
His mum has spent the last decade fighting for her son, throughout his hospital stays and navigating NHS services. For her, being an advocate for him has been central to helping Cayden have the best start in life.
She explained: “Knowledge is power, because when you know what’s going on, you are able to be an advocate for your child.
“There is nobody – not a doctor, not a nurse, nobody – who knows your child better than yourself.”
Despite the challenges he faces, Cayden’s determination to run, play and take part has always shone through.
He throws himself into any activity he can, something that his mum has always pushed him to do.
She said: “He tries to do everything that other children are doing. He has such a fighter spirit in him. He endures pain. He does not moan, and he just accepts himself for the way he is.”
Michelle-Selina has tried to make sure he is treated like any other child, both in school and at home.
She said: "He’s a normal child. No special treatment. I think that has really built a lot of confidence and resilience in him.”
Cayden has begun to understand his condition, and asked: “Mummy, am I disabled?”
Michelle-Selina said: “I didn’t want him to feel like he was disabled and couldn’t do things, but I also didn’t want to lie to him because he is different.
“He said, ‘Mummy, don’t worry. It’s okay. I don’t mind being disabled.’”
When his mum told him people would hear his story, Caden then asked: “Am I gonna be famous?”
And when she asked him why, he replied: “I think it’s my purpose.”