‘Within two weeks of Lili becoming ill she died,’ Crawley woman wants to raise awareness about HLH

A Crawley woman has spoken out about losing her niece to HLH in order to raise awareness about the deadly condition.

Wednesday, 5th May 2021, 8:55 am

Hemophagocytic lymphohistiocytosis (HLH) is defined as a severe systemic inflammatory syndrome and Niki Christou Budgen explained how it attacks a person’s vital organs.

Mrs Budgen said, “What it ends up doing, the white blood cells, basically there just are too many and they end up attacking the body and primarily then what happens is they attack all the main organs, heart, lungs, pancreas, liver, kidneys, and the brain. The prognosis for it is not good.”

Mrs Budgen also explained that when somebody has HLH their body goes into overdrive once an infection enters the body.

Lili Kyriacou. SUS-210423-154005001

According to the Crawley woman there is a still a lot that is unknown about HLH which is why her family wants to help raise awareness in honour of her niece, Lili Kyriacou, who lived in Cyprus.

Mrs Budgen said, “This is what it does, it takes your loved one away from you in a lot of different ways to the point where it is so distressing.

“You are hearing about how it is affecting their vital organs and god bless the doctors for trying everything in their power and some of the knowledge they do have, it wasn’t enough and that is the point. We need to know more. We really do. We need to do more to put the fire out and find the source of these infections so that we can stop the damage before it becomes irreversible.”

Mrs Budgen also explained that HLH is very similar to a lot of other illnesses which often leads to sufferers being misdiagnosed while St Jude’s Children’s Research Hospital in the United States of America say it is diagnosed in fewer than one out of every 50,000–100,000 children per year.

Lili Kyriacou HLH Awareness Page. SUS-210423-154021001

Mrs Budgen said, “I do not want Lili’s memory to just fade into the background because she wasn’t famous or we are not famous.

“This can affect anybody’s child at any time. Famous, not famous, this is certainly what has brought it home to us. There was no warning. Within two weeks of Lili becoming ill she died. It was just so shocking

“This is why we want to get it out there because I don’t want to start hearing stories about it and then think, ‘We didn’t do anything and we didn’t do anything to put it out there,’ and of course I am going to push it as her auntie because we lost her because of it and we are not going to let it win in that respect.”

Lili’s mother has recently been on television in Cyprus and started the Lili Kyriacou HLH Awareness Page to help others who may be suffering.

Lili Kyriacou. SUS-210423-153938001

On the page HLH is explained while possible treatments are also mentioned.

Mrs Budgen said, “I give to dementia, I give to cancer and they are already out there. We already know about them but this just needs someone pushing behind it to really put it on the map and if I can start from this point and make that happen then I am going to do it.

“I just want to be able to scream this from the rooftops and people will go, ‘Oh yes I know what you are talking about.’ Now everyone is looking at me going, ‘What is that? I have never heard of it,’ and that is why I need to get it out there.