
Donate to help raise money for research for HLH
Donation protected
Hello, my name is Chloe and I am fundraising towards research for a very rare life threatening condition called hemophagocytic lymphohistiocytosis (HLH).
In June 2024, my partner Kane became very unwell in a short space of time, he began to get headaches, hot sweats, blood in his stool.. we decided to monitor it and get in touch with a doctor if it continued. Kane then began burning up, was far too hot to physically touch & dripping in sweat but kept telling me was freezing & was wrapping up for bed. He had no energy at all and kept losing colour in his face. Kane was literally drained of energy, throwing up bile & acid reflux, physically could not eat & generally just deteriorating.
We made numerous trips to A&E, but didn't seem to get anywhere. We were advised it was more than likely a sickness bug, to go home and let it run it's course, we kept going back to be told it was Sepsis, then Diverticulitis, given antibiotics and sent on our way. After going back and forth to hospital for almost 3 weeks, Kane was finally admitted, three days later Kane was diagnosed with HLH, and told if he hadn't continued to keep going to hospital he'd have died.
Hemophagocytic lymphohistiocytosis attacks the immune system and causes multi organ failure. Kane has had to have countless blood tests, a bone marrow test, and will continue to have further testing carried out to monitor this condition and the impact it is having on his health. We have been advised the doctors & specialists can't give us a confirmed cause, however they believe this has been inherited as a result of a previous illness or infection.
HLH is incredibly rare, with only 2 specialists in the UK (that we are aware of currently). One being in Sheffield, and the other in London. Kane has been seeing the specialist in Sheffield and he will continue to see her on a monthly basis for the foreseeable.
We hope to raise as much money as we can to put towards funding for research and further treatment, not just for Kane, but for anyone that is affected by this horrific diagnosis, so any donations would be greatly appreciated.
Thank you ❤
Organizer
Chloe Mearns
Organizer
England