Hi, I’m Lucy. Mum of lovely luca who was born on 10/10/25. We had found it difficult to conceive Luca and felt so lucky and proud when he was born. Our world was complete.
Unfortunately Luca was only 2 weeks when we noticed he had a fever, rash and an enlarged abdomen. Luca was taken to hospital with suspected sepsis. He was started on antibiotics with multiple attempts to put in cannulas. Within 2 days we were transferred to 2 different hospitals and stayed in an intensive care unit. Many tests were taken to find out what was wrong. He was attached to many tubes and had a ventilator for breathing support. Being a parent you can imagine how difficult that must be. We were there all day and all night holding his hand and being by his side. He is on a lot of heavy medication to support him whilst we wait for genetic testing.
On the 3/12/25 we had a diagnoses of HLH (Hemophagocytic lymphohistiocytosis) which is a rare, severe, and life-threatening hyperinflammatory syndrome caused by an overactive immune system, leading to uncontrolled inflammation, tissue damage, and organ failure).
Luca started etoposide (chemotherapy) straight away to get HLH under control and ready to undergo a bone marrow transplant which have their own side effects.
12/12/25 we have received the best news that there is a match and a donor for Luca. Our road is long but we are on the right track. It will take some time for Luca to fully recover with a new working immune system
as you can imagine none of this was expected. My partner has not been able to work, we haven’t been at home much which has an impact on our finances and keeping up to date with bills and any things Luca may need. The transplant should happen around January but can take months to recover and become well. Never in a million years did we ever expect to be in this position and even putting this fundraiser out is very difficult for us, but we want to do anything we can to support Luca, getting him better and allowing him to have a good chance in life.
Thank you for reading our story and even if you can’t donate we appreciate you reading.
HLH is very rare and hope this spreads a little awareness for following your gut when something isn’t right and if you can to donate blood or even become a donor… is really does save lives.
Lots of love from Luca’s parents (Lucy and Wesley)
If there is any left over funds we will be donating them to Great Ormand street children’s hospital who help families like our selfs through these horrifically challenging times.
❤️❤️❤️❤️
