Race is on to raise money to send teenager for revolutionary cancer treatment in America

The parents of a teenager with leukaemia are racing against time to raise £200,000 to send him for potentially life-saving treatment in America (#USforIwan).

Iwan Clarke, 16, of Rotherham, South Yorkshire, was diagnosed with the disease when he was just 10 years old and has been through years of treatment – including two bone marrow transplants.

But despite the best efforts of doctors at Sheffield Children's Hospital, Iwan has not been cured – and now his family, supported by the children's cancer charity Ben's Heroes Trust, are pinning their hopes on sending him for revolutionary therapy in the United States.

The treatment, called CAR T-Cell therapy, would be carried out in a trial at Seattle Children's Hospital. It works by “reprogramming" the patient's own immune system, encouraging the body's T-Cells to recognise and attack cancerous cells as if fighting an infection.

The treatment is not yet available on the NHS and the family has just recently been told that they have been refused funding from the NHS for the treatment.This is despite showing encouraging results in other patients, including nine-year-old Emily Whitehead, and Iwan's consultant at Sheffield Children's Hospital supporting the plan to send Iwan to Seattle for the trial.

Iwan's parents Richard and Helen became aware of CAR T-Cell therapy after seeing a TV documentary about Emily's remarkable progress. Emily Whitehead, who had the same kind of leukaemia as Iwan, has been free of cancer for over three years having received this treatment.

Now the family, supported by Ben's Heroes Trust, families and friends are desperately trying to reach their £200,000 target. They have already raised £40,000 but that's a long way short of what they need to cover the estimated costs of treatment plus flights, accommodation and other expenses for the four months that the family would be in America and need as many people as possible to support the campaign.The campaign is called #USforIwan.

Richard Clarke said: “Iwan has been incredibly brave through years and years of chemotherapy, long hospital stays and dealing with the side effects, but none of the treatments he has had so far have resulted in a cure.

“We feel that this is his best chance and that this trial in America offers him a real chance of a full cure."

“Iwan has so much to give. He's stubborn, strong-willed and a real fighter and deserves to be given this chance to fulfil the potential we all know he has."

Despite missing three years of secondary school due to his treatment, and with a maximum of three hours a week of home study, Iwan achieved remarkable GCSE results including a Distinction in computing and A grades in Chemistry, Physics and Biology.

He is enrolled at Thomas Rotherham Sixth Form College for A-level courses in maths, physics and computing and hopes to go to university to study physics.

Ben's Heroes Trust, based in Southampton, was set up after parents Kate Ross and Simon Loyns lost their son Ben to cancer when he was just nine years old.The charity supports children with cancer and provides grants to fund treatments that show positive results but are not yet available on the NHS.

Simon Loyns, of Ben's Heroes Trust said: “Iwan has been through more in his 16 years than most of us could endure in a lifetime, yet remains upbeat and positive and a joy to his family and friends.

“Ben's Heroes Trust was set up to support patients exactly like Iwan, and their families, who are often looking at their last chance to save a life.

“Any donation, however small, will be a lifeline to Iwan and his family. Time is short but we won't stop until we have enough to send Iwan to Seattle."

To find out more about Iwan and to make a donation, visit Iwan's fundraising web page at http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/displaySomeoneSpecialPage.action?pageUrl=iwanclarke

For more about Ben's Heroes Trust, see www.bensheroestrust.org

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