You are here:

Kai's story

Published on

Updated:

Kai's story

Primary ciliary dyskinesia (PCD)

“Kai loves sports and is very good at football,” says his mum Aimee. “He plays for the school team and a local club and is a talented striker. We’ve had to remove the lightbulbs in our house because he will kick just about anything!”

But sadly, Kai may be unable to pursue his dream of playing sport professionally because he suffers from a serious lung disease called primary ciliary dyskinesia (PCD).

Children with this rare condition have a persistent cough from birth and face a lifetime of recurrent chest infections. They often develop hearing loss and eventually permanent lung damage. Treatment with antibiotics and physiotherapy to clear mucus from the lungs helps, but there is no cure.

Kai suffers from a constant runny nose and his demanding daily routine involves using inhalers and a device called an acapella which vibrates his lungs to help the mucus move. He uses two nebulisers – masks that fit over his face – so he can benefit from a salt solution and antibiotics. He takes more antibiotics in tablet form and vitamin D three times a week.

It’s hard work – there’s a lot to remember – but Kai never, ever complains, Kai's mum Aimee explains.

After suffering worrying symptoms, distressing tests and hospital stays from babyhood onwards, Kai was finally diagnosed with PCD aged 10 – and Aimee discovered that it is an inherited condition.

Kai’s father and I both have a ‘wonky gene’,” Aimee explains. “I feel that I gave my son an incurable condition. To watch your baby be ill and not be able to do anything about it is just the worst thing.”

Aimee is heartened to know that research to help children with PCD is taking place with support from Action Medical Research:

A new treatment that means Kai’s lungs could work normally could give him his life back.”

More family stories

Sophie: epilepsy

Recalling the time when her daughter Sophie’s seizures first began, mum Anne says: “Sophie first noticed something unusual happening when she was cross country running aged 11.

Ioan: Tourette syndrome

Ioan is a bright boy who loves swimming, running and making people laugh. But he has also suffered from bullying, with older boys picking on him at school and imitating his tics which are a symptom of his Tourette syndrome.

Tom: cerebral palsy

Tom was diagnosed with quadriplegic cerebral palsy before his first birthday and discovering that their baby son would face a lifetime of disability was heartbreaking for Maria and husband Terry