Tuesday, 26 January 2021

Charlie went across world in fight against disease

Charlie went across world in fight against disease

AFTER his diagnosis with a brain tumour in April 2015, Charlie underwent a
10-hour operation and had 31 sessions of radiotherapy followed by chemotherapy before being given the all-clear, writes David White.

Initially, the family were trying to raise up to £200,000 to pay for revolutionary proton therapy treatment — a type of particle therapy that uses a beam of protons to irradiate diseased tissue — so that Charlie didn’t have to have radiotherapy again.

He spent two years in remission but in spring 2018 two tumours were discovered on his spine.

Charlie was given the all-clear for the second time in August last year after undergoing specialist radiotherapy treatment, as well as chemotherapy, in Ankara. His family had to raise money to pay for this as well as their flights. The radiotherapy was not available at the John Radcliffe Hospital in Oxford, where he’d had surgery and chemotherapy previously.

In October last year, following the good news, the family celebrated with a dream holiday in Orlando, made possible by the children’s charity Rays of Sunshine. Charlie swam with dolphins, stingrays and tropical fish, went horse riding and visited Universal Studios.

However, the following month his family were told the disease had returned after a lumbar puncture showed cancer cells in his spinal fluid. He then returned to Germany for more immunotherapy treatment.

At the beginning of this year, the NHS agreed to treat Charlie and doctors at the John Radcliffe inserted an Ommaya reservoir under his scalp so that chemotherapy drugs could be delivered directly to his spine.

However, the treatments failed. A scan in March showed the disease in his spine and elsewhere.

Mrs Ilsley searched for new treatments, including clinical trials in America, but was told her son was not eligible.

He then underwent three weeks of a new form of immunotherapy, known as CAR-T cell treatment, in Mexico City in July.

A scan in the same month showed no new growth of the disease and the following month his family was told it was stable and had not grown since March.

But two months ago another scan showed there was a tiny area of cancer in his brain and he underwent more treatment in Mexico.

In May last year Charlie was named child of courage at the Henley Heroes awards and was given a standing ovation.

He also won the Bradley Lowery Courage Award at last year’s Against Breast Cancer Achievement Awards.

In 2018 he took part in Channel 4’s Stand Up To Cancer campaign and was featured on the live TV fundraising marathon.

Claire Brown, from Cheltenham, who led the online fundraising drive, said: “Rest in peace Charlie, what an inspiration you were and will always continue to be.”

To make a donation, visit https://www.justgiving.com/

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