I'm raising funds for Fred Bennett's 'Don't Look Down' Fund.

Fred was told that recovery rates for Acute lymphoblastic leukaemia (ALL) were very good – over 90% of children were treated successfully – and he began a three-year treatment plan of chemotherapy. He was optimistic and tried to remain positive. However, the treatment did not go to plan. At the end of the first six-week block he still had leukaemia in his bone marrow when it should have been clear. He was moved onto a stronger course of treatment but this was still not effective. In November, he began preparation for a stem cell transplant but it was impossible to get his disease level low enough. Standard chemotherapy wasn’t enough and a new immunotherapy drug caused severe side effects which took him to intensive care, and had to be dropped.

Early in 2020, as his leukaemia was refractory (not responsive to chemotherapy) he became eligible for Car T-cell Therapy, a new form of treatment that used the body’s own cells. They are taken out, transformed in a lab, and then put back to fight the cancer. Even though there were complications along the way, including a seizure and a positive COVID diagnosis, Fred and his family continued to be hopeful that this treatment would work where chemotherapy had failed.

Fred spent his 14th birthday in Great Ormond Street Hospital preparing for the cells to be given back to him. However, his doctors wanted us to be realistic. The chemotherapy they had used to keep the leukaemia at bay had not done very much and his levels were dangerously high and they had to tell us that his chances of survival were very small. When asked if he had any questions, Fred asked when he would be well enough to go swimming. 

Fred died on May 3, 2020, shortly after he had received the Car T-cells, nine months after diagnosis.  They proved to be no match for the leukaemia, which suddenly picked up speed and overwhelmed him.  It all happened so quickly that he never knew he was dying, and never gave up hope that he would get his motorbike.