Watch the full video report by ITV Meridian's Chlöe Oliver
Spinnaker Tower in Portsmouth lit up gold last night in memory of a girl from Stubbington.
Sophie Fairall, who was 10, raised thousands for charity in the year since she was diagnosed with Rhabdomyosarcoma, a rare form of cancer, in September 2020.
Due to the rarity there is very little research undertaken, so treatments used are generally for other cancers.
Her parents Charlotte and Gary want to change that. They say currently only 4-5% of funding from most cancer charities goes towards helping children fight the disease. They believe with more focus and funding that more children's lives can be saved.
Sophie had written up a celebrity bucket list since her cancer returned in June and she went onto cook with Gordon Ramsay and appear on This Morning with Holly Willoughby.
She also came to the attention of the England squad, receiving messages from Mason Mount and Jack Grealish in the last few weeks.
Watch: Spinnaker Tower lit up in memory of Sophie
In a statement on her Facebook page, her family said she died at home in her mother's arms.
Her family said: "She was the most beautiful, funny, caring, strongest girl ever.
"She would light up a room wherever she went.
"She made an impression on people with her smile and personality."
They added that during her treatment she had "faced every part with a smile and positivity."
Charlotte Fairall, Sophie's mother:
Sophie's mother, Charlotte Fairall, said she believes her daughter could have been saved if new treatment had been available.
She said: "I hope Sophie's story and her journey is enough to create that change."
Charlotte added, that Sophie "touched people all around the world" and that the family have been overwhelmed by support and even received cuddly toys from a zoo in Australia during Sophie's last week.
Around 60 children are diagnosed with the condition every year, according to the Children's Cancer and Leukaemia Group.
Sophie raised more than £50,000 for Alice's Arc, a charity specialising in childhood cancers.
Her family now want to build more awareness and secure more funding into these rare diseases.
A petition raised by Sophie's mother Charlotte, calling for an increase in share of research funding that goes towards childhood cancers, has already been signed by more than 16,000 people.