In early November 2016 our only child Drew Barker-Wright was diagnosed with Chordoma, an ultra-rare childhood cancer that occurs in the skull base and spine. He was admitted to oncology at Birmingham Children's Hospital where he began intensive chemotherapy and surgery.
Drew's journey was fraught with complications from the outset. This was primarily due to the rareness of his cancer and the lack of documented cases. After numerous efforts to save his life, Drew slipped into a coma. We were told that nothing more could be done and we chose to bring him home. On the morning of February 24th 2017, Drew took his last breath at home with mummy and daddy. He had just turned 4 years old. His battle was brief and brutal but, bravely fought for one so young.
Paediatric Chordoma affects 1 in 20 million children, that’s 350 cases worldwide annually and approximately 3 cases a year in the UK. Currently this cancer is underfunded and misunderstood.
In Drew’s memory, we have founded a charity in his name. Its aim; to fund research and support families affected by Paediatric Chordoma.
Drew’s charity has three objectives:
To fund specific research into mapping the genetic make up of Paediatric Chordoma, which in turn will lead to the development of new drugs and targeted therapy.
To facilitate grants to the newly diagnosed, helping them and their family’s through the initial shockwave of diagnosis.
‘Drew’s Gift’ - to provide each newly diagnosed infant with a gift for the hospital bedside.
Drew’s charity is the first in the UK to address Paediatric Chordoma and we hope to build a lasting legacy for our little man.