My name is Zoe and I am organising this fundraiser for my close friends, Connie and Adam, whose lives have been turned upside down by HLH.

Their three year old son Albie has a very rare condition called HLH (Hemophagocytic lymphohistiocytosis) and he is currently in the ICU, where he has been for nine days so far. The condition needs a lot more research but one of the triggers is EBV - the common cold - a virus we have all experienced has caused Albie’s immune system to attack itself.

Albie has a PICC line in, chest drain for the fluid that continues to build up in his lungs, a ventilator to help him breathe and is at risk of going on dialysis for his kidneys. His blood isn’t clotting and his tiny body is struggling to cope with all the medicines being pumped through his system, including chemotherapy.

Anyone who knows Albie knows that he is tough, strong willed and an absolute fighter. He is fighting HLH with everything he has but the condition is very aggressive and sadly he has already experienced setbacks. The road to recovery is going to be a long one and currently filled with painful uncertainty for him and his family.

Albie should be going to birthday parties, playing dinosaurs and preparing to start school in September but instead he is fighting for his life. Since being admitted to hospital almost two weeks ago, Albie’s parents have been forced to live one hour at a time, not knowing if Albie will pull through.

Connie and Adam have been, and will be, with Albie every step of the way. His baby sister Honey, and both their families, are struggling to adapt to a very different life as they support Connie and Adam, worry for Albie and share taking care of baby Honey. Everyone’s priority is Albie and supporting his parents in this absolutely devastating time.

No parent should have to worry about finances when they are going through this hell. They should be by their child’s side, as Connie and Adam will be by Albie’s.

The money raised will help ease the financial pressure while they focus entirely on Albie. It will go towards lost income while Connie and Adam are unable to work, travel to and from the hospital, parking, meals and any additional expenses that come with being away from home for an extended period.

As their life has been turned upside down, financial insecurity should not be one of the burdens on them. They need all their focus to be on Albie and being there for him as he fights this devastating disease.

If you are able to donate, no matter how small the amount, it will make a huge difference. If you aren’t in a position to give, simply sharing this page would genuinely mean the world, more people need to know about HLH.

Most importantly, we ask that you keep Connie, Adam, Albie, Honey and their families in your thoughts and prayers during this incredibly difficult time.

Thank you for your kindness, generosity and support.