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Leanne Lightbody is raising money for CCLG: The Children & Young People’s Cancer Association
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SkyDIVE for a Difference · 10 September 2022 ·

Fred Bennett's 'Don't Look Down' Fund is a Special Named Fund at CCLG raising funds for research into acute lymphoblastic leukaemia.

Story

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

Fred Bennett's 'Don't Look Down' Fund is a Special Named Fund at CCLG raising money for research into acute lymphoblastic leukaemia (ALL) in memory of 14-year-old Fred Bennett. 

Fred’s Story

Fred was 13 years old when in July 2019 he was diagnosed with ALL, a cancer of the blood.

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.

Children's Cancer and Leukaemia Group is a leading children's cancer charity and the UK and Ireland's professional association for those involved in the treatment and care of children with cancer.

Each week in the UK and Ireland, more than 30 children are diagnosed with cancer. We bring together professionals to ensure all children receive the best possible treatment and care. We support young patients and their families with our award winning, expert information. We fund and support research into childhood cancers.

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About the campaign

Fred Bennett's 'Don't Look Down' Fund is a Special Named Fund at CCLG raising funds for research into acute lymphoblastic leukaemia.

About the charity

CCLG: The Children & Young People’s Cancer Association, is dedicated to creating a brighter future for children and young people with cancer. We fund and lead pioneering research, provide trusted information for families, and bring together professionals to improve treatment, care, and outcomes.

Donation summary

Total
£750.01
+ £137.00 Gift Aid
Online
£750.01
Offline
£0.00

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