Luke's story

Whilst being treated for cystic fibrosis, Luke - just eight years old - contracted an antibiotic-resistant infection called Burkholderia cepacia (BC) in his lungs.

To fight off the infection, Luke endured endless variations of treatments and antibiotics, as well as long hospital stays, taking over his childhood.

Luke’s mother, Juliet, partnered with StoryBug, a project funded by Medical Research UK, to tell Luke’s story and the impact his condition had on their family.

“The battle going on inside of him"

"'Evening Luke,’ said the night nurse as she came in with his tray of medications. ‘What are you watching tonight?'

I looked over at my eight-year-old son, lying on the bed and was overwhelmed with sadness, knowing the battle going on inside of him. ‘Star Wars again tonight, it is. The battle is never ending,’ I jested, something which we as a family could relate to.

Luke was fighting his own enemy, the resistant bacteria Burkholderia cepacia (or BC for short)."

"Hospital stays were frequent and long"

"The resistant bacteria had established a home deep inside Luke’s lungs, already burdened with cystic fibrosis. The hospital stays were frequent and long.

This bug seemed outer-worldly, with an intelligence that outsmarted every antibiotic we tried. The fight both physically and mentally intensified. The treatment was ramped up.

BC wedged itself deeper into Luke’s lungs and deeper into our family."

"The antibiotics made little difference

"His body became a battleground, attached to IV machines as different antibiotics were pumped into his body. Hopes rose only to be dashed.

'We need to stop,’ I said, ‘as I am losing my son. He isn’t coping with the intensive treatment. He needs to breathe. Our family needs to breathe.’

The doctor heard me. The treatment can only be that which the patient can manage, and the intensive antibiotics had made little difference."

"Luke needs to enjoy his now 10-year-old life again"

"Together, we decided to de-intensify the treatment. We needed to be home more, to have some normality. Luke needed to enjoy his now 10-year-old life again, if only for a time.

Three and a half years later, my warrior now has the all clear and no longer colonises BC. Now we spend fewer weeks in hospital and many more snuggled up on the sofa at home watching Star Wars.

Though we know BC can strike again at any time, we live for now, understanding that resistant bugs are all around us and we remain ever waiting."

Juliet's digital story

Juliet, Luke's mum, collaborated with researcher Becky McCall, on StoryBug - an initiative sharing the stories of those who have been affected by drug-resistant infections through digital storytelling.

By telling the stories of people who have been affected by drug-resistant infection, Becky is is aiming to reshape how we think about and value antibiotics.

Becky McCall is a a PhD student on our National PhD Training Programme in AMR Research, based at UCL’s Institute of Health Informatics.