Please help Bella keep the home shared with Luke

My name is Luke and I am now nearly 20 years old.

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

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

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

Initially, things seemed to be as planned. My cancer was in remission and the side effects were manageable.

At the beginning of last year my health took a turn for the worse and I began to suffer from breathlessness. Despite being prescribed various medication, things just got worse. The Royal Marsden advised that I 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. I have been very unlucky to get this rare complication which currently has no medicinal cure.

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% (from 83% in January 2022). Over Xmas 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. My lungs are only likely to get worse and currently the damage is irreversible. 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.

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 5 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. The other downside of this is that only a 5-10 year life expectancy is predicted. I want to avoid this if at all possible.

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 2 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, hopefully by the end of the year. Waiting until then could unfortunately be too late for me.

Thank you so much and I will continue to update you with my progress.

Luke Bailey