Oscar Long was diagnosed with an incurable and untreatable diffuse intrinsic pointine glioma brain tumour at the age of six and passed away just a fortnight later on Remembrance Day – 11 November 2002.
Since losing their second eldest child, Oscar's parents Sarah and David, who also have three other children: Ben, now aged 24, Leo 15, and Niamh, 14, have raised more than £3,740 for the Brain Tumour Research charity.
Sarah, David and Ben were at Brain Tumour Research’s centre of excellence at Queen Mary University in London on Wednesday May 15 to place a tile on the Wall of Hope in memory of Oscar.
Each tile represents the £2,740 it costs to fund a day of research.
Sarah said: “We lost Oscar in November 2002 so quickly after his diagnosis that he wasn’t even able to return to school.
"Today there is still no effective treatment for DIPG and the average survival time is nine months from diagnosis.
“We have held an open house on Wear A Hat Day for several years and one year we organised a Wear A Hat Day event at the Nag’s Head in Winslow.
"We also put together a team for the Swanbourne Endeavour in 2017, the year Oscar should have been turning 21, to raise much needed funds for research to help find a cure for this awful disease.
“To have lost a child to this most horrendous of diseases is devastating.
"There are no other words.
"I have no memory of some parts of his last days and I suppose the shock and grief have caused me to block things out.
"The following months were hard and we were sometimes overwhelmed by our loss.
"We were lucky to have the support of close family and friends.
“Placing a tile on the Wall of Hope was a lovely tribute to Oscar and a fantastic celebration of our fundraising efforts.
"Along with amazing support from many friends and family members, we are helping others that are diagnosed with this devastating disease and I’m sure Oscar would be proud of our achievements.”
Paula Rastrick, community fundraising manager at Brain Tumour Research for the central region said: “We are very grateful to Sarah and David and their family and friends for raising vital funds to support important research into a disease which affects so many people and their families each year.
"Stories like Oscar’s remind us all that we cannot allow this desperate situation to continue.”
Funds raised will develop Brain Tumour Research's network of research centres in the UK, where scientists are focused on improving outcomes for patients and, ultimately, finding a cure.
To make a donation to Brain Tumour Research visit www.braintumourresearch.org/donation