Levi Ringer, a pupils at St Peter’s School in Stanley, was just six when he was diagnosed with a brain tumour in 2006 and died just weeks later.
His family set up the charity, Levi’s Star, after his death to help fund research into childhood brain tumours and has organised annual events around the time of Levi’s birthday on March 16.
With what would have been his passage into adulthood next week, and it being the charity’s tenth anniversary, his mum Vicky admits it will be a very poignant few days.
Vicky said: “It’s always there, you just learn how to live with the grief, you never get over losing a child.
“I carry it every day, it’s a heavy burden.
“We miss him every day and love him as much as we ever did.
“It’s difficult watching his classmates grow up and we imagine how Levi would have been and how tall he would have been, that’s really painful.”
When Levi became ill in 2005, doctors initially failed to diagnose the seriousness of his condition, despite Vicky’s growing fears that he had a brain tumour.
He suffered from severe headaches, was waking up in the night to be sick and had persistent dizzy spells.
A CT scan in July 2006 eventually confirmed her worst fears.
Levi underwent emergency surgery but his condition began to deteriorate and he was unable to breathe on his own.
He was left on a life-support machine but died six weeks later.
Vicky said the family’s lives were simply “shattered”, but they were eventually able to channel their grief into setting up the charity, which to date has helped hundreds of children who have suffered brain tumours.
It has also raised and distributed more than £500,000.
A campaign to lobby the Government to invest more into cures and treatments for brain tumours among the young also led to a Parliamentary working group being formed which Vicky says is slowly beginning to take effect.
Reflecting on the past decade, Vicky said: “It’s been amazing, it’s been very challenging and hard work but very rewarding and we’re very proud of what we do.
“We are making a difference and on a personal level for every child we help, it’s getting a little bit of justice for Levi.”
The annual fundraising walk for the Levi’s Star charity will take place at Newmillerdam Country Park on Saturday, March 17.
Suitable for all ages, people are being asked to meet at the main car park at 1pm for the slow stroll around the lake, with refreshments for the younger walkers available afterwards.
Sponsorship forms for the walk can be downloaded from www.levisstar.co.uk.
Alternatively, an online fundraising page can be found on the Levi’s Star web page.