On October 12th, I’ll be running my first-ever marathon in Budapest (that’s 42km!). I set myself this challenge not only to become a healthier person but also to raise funds in support of The Drew Barker-Wright Charity. A charity that showed so much kindness and support to my cousin Lily, and continues to help many other children diagnosed with chordoma and other rare childhood cancers.

ABOUT THE CHARITY

The Drew Barker-Wright Charity was founded in 2018 in memory of 4-year-old Drew. Drew passed away in 2017 after being diagnosed with chordoma, a rare childhood cancer.

Run on a voluntary basis, The Drew Barker-Wright Charity is rooted in Drew’s gentle spirit, bravery and the belief that children with chordoma and other rare childhood cancers deserve a better pathway of treatment.

Childhood and cancer are two words that no parent wants to hear. But, unfortunately the rate of cancer in children is increasing and the cause of rare childhood cancers, like chordoma, are still unknown.

The Drew Barker-Wright Charity stood beside my cousin Lily, supporting her my family when she was ill with chordoma. Their endless kindness and support during such a difficult time meant so much, and for that, we will always be deeply grateful.

LILY’S STORY

Lily always had a huge smile and tons of friends, she enjoyed holidays in the campervan, making copious amounts of slime, crafting and making TikTok dancing videos. She always had an infectious laugh and an awesome sense of humour to match, she was incredibly caring and even looked after the younger children battling Cancer at Addenbrookes hospital Cambridge during her lengthy stay.

In 2019, at just 5 years old, Lily was diagnosed with Chordoma, a very rare type of bone cancer. She faced multiple surgeries and rounds of radiotherapy with great courage and spirit, but despite everything, the cancer continued to spread, and in 2020, at only 6 years old, Lily sadly passed away.

THE AIM

My funding goal is to raise £1000 (possibly more!), with 100% of the proceeds going directly to the Drew Barker-Wright Charity. The idea is not only to raise funds but also to help spread awareness of the lesser known types of cancers and chordoma that affect children all over the world.

All money raised will:

- HELP FUND RESEARCH: To fund specific research into Paediatric Chordoma and to support the development of kinder, targeted therapies to treat those affected.

- GIVE FINANCIAL SUPPORT: To provide financial support to the newly diagnosed, aiming to help them through the initial shockwave of diagnosis

- DREW'S GIFT: To supply a gift for the bedside of newly diagnosed infants.

The Drew Barker-Wright charity was founded and run in memory of their little man Drew, who lost his battle at the tender age of four.

Together, it's the only way x

ABOUT CHORDOMA & CHILDHOOD CANCER

Chordoma affects 1 in 20 million children annually. That’s approximately 3 children each year in the UK. Like other rare childhood cancers, there is a lack of clinical trials available and treatment options remain limited.

Cancer affects children differently to adults. This is because their bodies are still growing. Currently rare childhood cancers, including chordoma, are treated with the same drugs as adult cancers.

Over the past 20 years, the FDA has approved about 190 new cancer treatments for adults. Since 1980, fewer than 10 drugs have been developed for use in children and ONLY 3 have been FDA approved (FDA Report 2019).

Adult drugs can have unwanted side-effects on growing bodies because they affect normal cells as well as cancer cells. Long-term side-effects can include kidney, liver or heart problems, infertility and in some cases lead to secondary cancers.

The Drew Barker-Wright Charity, with your help, aims to promote rare tumour research and support development of new forms of treatment designed specifically for children, using a less invasive, targeted approach.