Fight to Breathe – the story of a little boy with cystic fibrosis and how a drug resistant bug outsmarted every antibiotic
Juliet Diener (told and voiced by Juliet, Luke’s mother)
“This bug seemed outerworldly with an intelligence that outsmarted every antibiotic we tried.”
Luke, 9, who has cystic fibrosis and battled an antibiotic resistant infection for nearly 3 years.
This is the story of a 9-year-old little boy with cystic fibrosis who developed an antibiotic resistant infection.
Here, in this digital story, Luke’s mother, Juliet, tells the story of how Luke and his family battled the drug resistant bacteria, known as Burkholderia cepacia (BC), that caused his infection.
Cystic fibrosis is a genetic disorder where excessive, thick, sticky mucous clogs up the lungs and the digestive system, increasing susceptibility to infection. If the bacteria causing these infections are resistant to antibiotic treatment then this can be life-threatening.
Not only do resistant bugs wreak physical turmoil but the isolation and the uncertainty exert a huge mental toll on the patient and family.
“The hospital stays were frequent and long. These resistant bacteria had established a home deep inside Luke’s lungs…”
Sometimes the answer doesn’t lie with drugs alone -albeit medical care is essential for people with cystic fibrosis – here, Juliet relates how, with clinician support, they scaled down the hospital stays in order to restore some normality to both Luke’s and the family’s lives and how this seemed to make the difference to Luke’s recovery.
“We need to change course as I’m losing my son. He isn’t coping with the intensive treatment. He needs to breathe… our family needs to breathe.”
