After a four-year-old boy passed away due to an ultra-rare cancer in 2017 his parents promised to do everything they could to help other families going through a similar situation. Melanie Barker and Jon Wright sadly lost their son Drew Barker-Wright in 2017 after he was diagnosed with aggressive stage four cancer.
By this point, Drew was diagnosed with an aggressive stage four cancer which had a poor prognosis. Drew was initially diagnosed with rhabdoid cancer but this was later reclassified as chordoma cancer. Speaking about Drew’s symptoms, Melanie shared that just because a child displays the same symptoms it does not mean they have cancer. However, she believes the symptoms should be explored thoroughly in order to rule out cancer as a possibility.
"Other symptoms could include pain that doesn't go away, persistent vomiting, or headaches that don’t seem to go away. Cancer is right at the bottom of the list of what a health practitioner might think is causing the symptoms. But as a parent, you need to keep pushing the issue, which is unfortunately what happened to us for so long.
"I think a lot of the nurses fell in love with him because even though he was only three he could communicate really well. He was a delightful child and very creative. Before he became ill he was a bundle of energy – he ran everywhere and was always singing. He would wake up in the morning singing and would come and wake us up by knocking on our door and singing to us. He loved to dance and he was starting to read and he loved to read with me.
Because of how alone the family felt throughout Drew's illness, despite the amazing support from nurses, Melanie said it was one of their main motivators to help other families affected by rare childhood cancer. Through the Drew Barker-Wright Charity not only do they help fund research into rare childhood cancers but they provide information to families and connect them with one another so they always have support.
In the nearly six years since the Drew Barker-Wright Charity was founded the organisation has funded £135,000 of research into rare childhood cancer. The charity has also put in place a grant application to provide some financial assistance to families of newly-diagnosed children in the UK. She said: "You’re given a lot of books to read in hospital and a lot of them are about being in a hospital and having an illness to help the child understand what is happening to them. We decided we didn’t want to go down that route and instead wanted to do an adventure and something magical and. We wanted it to be something that would be an escape when you read it and for it to be something you read over a few nights.