Our gorgeous girl Addie was just 16 when she lost her battle. She was young girl, carefree, and full of life - if she was in the room everyone knew it.
In 2011, when Addie was 9, 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.
For the next few years, there was some obstacles to overcome, with regular visits to hospital, but it was settled and everyone began to relax that she had beaten cancer.
However, five years later in September 2016, following a family party, Addie got up and was unable to speak and she appeared to be in a trance-like state. She was rushed by ambulance into a nearby hospital. During the journey, she experienced several seizures - it was terrifying but no-one anticipated what was to come.
Addie was stabilised but scans revealed a mass on her brain. She was transferred to Great Ormond Street Hospital, where a lumbar puncture and biopsy confirmed Addie had an aggressive, high grade, diffuse, inoperable brain tumour. More shockingly, the brain tumour was a primary cancer, unrelated to the first cancer. We were told Addie wouldn't survive and life expectancy was 12 - 18 months with treatment to extend life only. We requested second opinions in and outside of the UK but there was no further treatment available. Genetic testing revealed Addie had a mutation of the TP53 gene and she was diagnosed with Li-Fraumeni Syndrome (LFS).
Addie's tumour remained stable for just over a year but it then became aggressive and although at the time a trial was offered, sadly, it became apparent very quickly that Addie was too poorly and further scans revealed the disease had spread to the spine and to other parts of the brain - the trial was no longer an option.
The disease was brutal and took its toll, eventually taking her mobility, sight and mind. Addie died at home on 1st February 2018. She was just 16 years old.
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 is a huge loss to our family - any loss is devastating to a family - but to lose someone so young is wrong - our family will never be the same again. There will always be one of us missing and that's why this is so important.
Addie lost her battle but please help us to win the war.
On 25 May 2019 we're running/walking the Race of Life in Brentwood. If everyone donated just £1 (less than the price of a cup of coffee - though obviously more is very welcome!) just think how much that would add up to!
Thank you for reading this - any amount is very gratefully received.