Weʼre raising £5,000 to Support the Addie Brady Foundation to further study, raise awareness and support families with Li-Fraumeni Syndrome. (LFS)
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Andrew, D'Arcy, Paul, Laura, Nick, Michelle, Tara, Leasa, Sam, Jodie and Rob will be running a marathon distance each week for 10 weeks starting on the 3rd June for the Addie Brady Foundation in memory of Addie. Addie.. some of you already know her and or was fortunate to have met her. Addie was just 16 years old when she died from an aggressive brain tumour on the 1 February 2018. This was Addie's second primary cancer in her very short life time. Addie was only 9 when she was diagnosed with a rare form of bone cancer, spindle cell sarcoma. Surgery removed Addie’s tibia bone, which was replaced with titanium metal and she spent several months in hospital having chemotherapy. Addie recovered and she returned to a relatively normal life. However, five years later in September 2016, Addie got up and was unable to speak and appeared to be in a trance-like state. She was rushed to hospital as an emergency and suffered several more seizures. After many scans and tests it was confirmed Addie had a high grade, diffuse, inoperable brain tumour. Devastated and in shock we began the only treatment available, whilst searching for alternative treatment beyond the UK. During this time a doctor in America suggested genetic screening for a condition called Li-Fraumeni Syndrome.(LFS) If you’ve never heard of it don’t feel bad. Neither have most people. It’s a genetic predisposition to cancer, caused by a mutation on the p53 cancer suppressor gene. What could possibly be worse than cancer? How about a condition that gives you a 90% chance of getting cancer in your lifetime – and multiple cancers? Addie was tested and proved positive for LFS. LFS is rare but the disease is not as rare as they once thought it was, then spreading awareness is crucial. There are thousands of families out there right now who, like us used to, just think they’re unlucky. It’s important not only for their own sake, but for future generations. Every person who carries the mutation has a fifty percent chance of passing it on to their children. Addie was unfortunate, in her case, it was a result from new (de novo) mutations in the gene; these cases occur in people with no history of the disorder in their family. The Addie Brady Foundation aims to support much needed research into high grade paediatric brain tumours with the hope of finding a cure and better treatment for childhood brain cancer. In addition, it supports further study, awareness and support for families with Li-Fraumeni Syndrome. (LFS). Addie was beautiful, loving and funny. She died as she had lived – complaining little, never acting as a victim and trying to see the positive in life. In her short life, she experienced lots and touched the hearts of everyone she met.
Addie was an extraordinary young girl, with a big, strong heart and an even bigger smile. We hope Addie’s lion heart legacy will live on, helping and supporting others in the fight against cancer. Addie tragically is no longer with us... We are her voice now!
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Jun 26, 2019
What an amazing way to fundraise & remember the beautiful Addie. Good luck to everyone. 👏
Jun 25, 2019
Brilliant effort and commitment Jodie xx
Jun 25, 2019
Good luck! With Love from the Smith's xxx
Stuart and Rhona
Jun 24, 2019
Good luck Paul and Laura and all the other runners. An amazing feet for an extremely worthwhile cause 👍
Jun 19, 2019
Addie runs with you all.. xx
Jun 13, 2019
Good luck! A very worthy cause in memory of a special person x
Jun 13, 2019
Good luck all! A fantastic cause xx
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