Luke's story
During his treatment for cystic fibrosis, eight-year-old Luke 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 Story Bug, a Foundation-funded project, to tell Luke’s story and the impact his condition had on their family.
"This bug seemed outer-worldly, with an intelligence that outsmarted every antibiotic we tried"
“The resistant bacteria established a home deep inside Luke's lungs"
"'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).
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.”
What is antimicrobial resistance?
Antimicrobial resistance (AMR) is increasing due to the overuse and misuse of antimicrobial drugs, causing bacteria, viruses, parasites, and fungi to gradually develop resistance to medicine.
Antibiotics and other antimicrobial drugs (such as antiviral and antiparasitic drugs) are vital to preventing and treating illnesses, diseases and infections and making surgeries and cancer treatments safer. As microorganisms, such as viruses and bacteria, start building resistance against these drugs, infections are becoming increasingly difficult or even impossible to treat.
AMR is a global threat to human health, killing 1.2 million people in 2019 alone.
"He needs to breathe. Our family needs to breathe."
"His body became a battleground”
"BC wedged itself deeper into Luke’s lungs and deeper into our family. 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.
The intensive antibiotics had made little difference. 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."
Story Bug was founded by Becky McCall, a PhD student on our National PhD Training Programme in AMR Research, based at UCL’s Institute of Health Informatics. Storybug advocates for the careful use of antibiotics and shares the stories of those who have been affected by drug-resistant infections through digital storytelling. The project aims to reshape how we think about and value antibiotics and raise awareness about this health threat.
To contribute or hear more stories about antimicrobial resistance, visit the Story Bug website.
Hear more of Luke's experience in video format with Fight to Breathe - his digital story:
Inspired to take action by Luke's story?
Donate to support more life-changing medical research and give hope to those grappling with underfunded and overlooked conditions.
Donate now