In April this year, Emily Whitehead’s family had almost given up hope.
The brave six-year-old had been fighting leukaemia for two years, only to relapse for a second time during intensive chemotherapy treatment in February.
Doctors had exhausted all the traditional treatments as Emily could not remain in remission for long enough to attempt a bone marrow transplant. So her desperate parents, Kari and Tom, started looking at more radical options.
‘We made the decision that we needed to go somewhere else,’ said Mrs Whitehead.
‘We needed to try something new, different and cutting-edge.’
So they turned to the Cancer Center at The Children’s Hospital of Philadelphia, which is involved in testing a pioneering new therapy.
Doctors suggested they sign Emily up to a clinical trial that would use a disabled form of HIV to carry cancer-fighting genes into her T-cells (disease fighting cells). The hope was that this would re-programme her immune system to recognise the cancer cells and start killing them.
Several adults had already been enrolled in the study at the Hospital of the University of Pennsylvania and had responded well, but as it was so new the treatment wasn’t without risks. But time was running out for Emily, who is also known as Emma.
Mr Whitehead said: ‘We were told that we were down to 48 hours of making a decision or she could start having organ failure.’
They comforted themselves with the knowledge that even if the treatment didn’t work, it would provide doctors with information that could help them save other sick children.
So on April 17, the then six-year-old became the first child to have the therapy known as CTL019.