Teenager Luke Rumsey may be seriously ill but it hasn't stopped him raising money to help other children.
The 15-year-old has a rare neurological condition which has led to cerebral palsy and epilepsy. He is also registered blind.
Despite his condition, he threw all his energies into raising money for the £5 million appeal to build Chestnut Tree House, the first children's hospice in Sussex.
He became the face of the appeal when it was launched and was pictured on the front of thousands of leaflets delivered to homes, schools and businesses in Worthing.
He joined in fund-raising activities and, until his health slowed him, was keen to persuade people of the need for a hospice. He was the first patient registered when it opened last year.
Luke's mother Wendy, from Worthing, says her son has been exceptionally brave and positive.
He uses a special wheelchair that helps keep him upright and once spent three months lying in full body plaster in a hospital bed after an operation but never complained.
Julie said: "He's so positive. He'll come round from major surgery and still be smiling."
Luke has to be fed through a tube in his stomach but, despite the constant pain, he tries to stay cheerful.
Luke goes to Chailey Heritage School for children with disabilities, near Lewes. Julie said: "He loves going to school. It is really important to him.
"It does not matter how ill he is feeling, he won't miss it. He would go on Saturday and Sunday as well if he could."
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