Brave Alexandra Hodge, the youngest person to undergo brain surgery while awake, has lost her battle with cancer.
The teenager died at home surrounded by her family just days after returning from a dream holiday to Disneyworld, Florida and Antigua.
Alexandra, 14, died at her home in Brighton Road, Lancing, after a three-year battle with cancer.
Alexandra became ill in the summer of 2002 when her mother Elaine and father Nick noticed she was suffering from "blank-outs."
She was first treated for epilepsy but later the same year she was diagnosed with a brain tumour.
She underwent three operations over a two-year period to remove the tumour which grew back several times and eventually became malignant.
World-renowned brain surgeon Henry Marsh, who featured in the BBC documentary Your Life in Their Hands, operated on Alexandra's brain for a fourth time to remove as much of the tumour as possible without leaving her brain-damaged or paralysed.
He operated on her while she was awake. At just 13, she was the youngest person in Britain to undergo the operation at London's Royal Marsden Hospital.
While in theatre, Mr Marsh asked Alexandra questions, while carrying out intricate surgery. Alexandra even asked Mr Marsh to "make sure it was all out" during the procedure.
Despite the tough treatment regime of operations and chemotherapy Alexandra remained cheerful and positive.
She lost her hair but remained determined to bounce back and the family went on holiday to Portugal. She even returned to school in September last year and her routine scan in November was clear. The family hoped their two-year nightmare was over but at the end of January this year Alexandra developed back pain, a sign the cancer had spread to her spine and eventually her lungs.
Elaine said her daughter's death at 8.40pm last Wednesday was very sudden.
She said: "We had only come back from holiday on May 31.
"She went on all the rides in Disneyworld. She loved it. We thought she would have about three months but she woke up last Wednesday and died that night."
The family is relieved Alexandra was able to enjoy her holiday of a lifetime and spend her last hours at home with her mum and dad and brother Joshua, 13, and Bethany, eight.
Elaine said: "She was so brave. She had no fear of dying. She was just worried about leaving us."
Elaine said the family's faith as Jehova's Witnesses was helping them through their loss.
Alexandra's funeral is being held on Friday at 2.20pm at Worthing Crematorium and anyone who knew her is welcome. Friends and family are asked to wear clothes of their choice.
Donations in memory of Alexandra should be made to the Royal Marsden Hospital, London, and sent to Ian Hart funeral directors, South Farm Road, Worthing.
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules hereComments are closed on this article