More than £17,000 raised for Eastbourne man suffering with rare form of leukaemia whose life saving medicine is only available abroad

In December 2020, aged 17, Luke Bailey was diagnosed with a rare form of leukaemia and was immediately admitted to the Royal Marsden in Sutton to start chemotherapy.

Although his treatment went well, it was felt that he needed a bone marrow transplant as his disease was aggressive and was likely to return.

A donor was found for Luke in Germany and my transplant took place in July 2021.

However, at the beginning of last year Luke’s health took a turn for the worse and he began to suffer from breathlessness.

The Royal Marsden advised that Luke had a condition called Chronic Pulmonary Graft Versus Host Disease. It is a serious and rare side effect which affects people who have had a transplant. The host body comes under attack from the donated cells from the transplant and currently has no medicinal cure.

Luke said: “I have just completed a clinical trial but unfortunately, this has not helped and my condition has continued to seriously deteriorate. My lung function is now approximately 15 per cent from 83 per cent in January 2022.

Over Christmas 2022 my lung collapsed and I spent Christmas in intensive care in London. I am reliant on oxygen 24 hours a day and am unable to walk more than a few steps without having to rest and rely on a mobility scooter.

"I now live with my girlfriend, Bella, who is amazing and is my carer - she does everything for me and I can't thank her enough. Due to my condition, the Royal Marsden referred me to St Wilfrid's Hospice as if I get a respiratory infection this could be fatal.

“There is hope however as a new drug has been trialled in America and is now being used to treat patients there. It is the only medication that has shown to improve the condition that I have.

"Although there are no guarantees, we are hoping that it could reverse the damage to my lungs to a point where I have a better quality of life. The only option currently, is to try to keep me well for five years, so I can have a lung transplant. My clinical team have advised that my chances of getting to this point are slim due to my being at an increased risk of infection and illness.

“Unfortunately, the drug is not yet available on the NHS as it is still in the process of being approved. This is likely to be some months away and that is why I have set up this page.

“The drug will cost around £7500 per month and I could potentially be starting treatment in the next two weeks. It could save my life and I am therefore asking you to spare any money you can to help me and my family pay for this treatment until it becomes available under the NHS.

"Waiting until then could unfortunately be too late for me.”

So far the fundraiser has raised £17,122 from a goal of £65,000.

If you would like to donate you can do so online via Luke’s GoFundMe page.