Jasper Bolsover suffers from Hemophagocytic lymphohistiocytosis or HLH – a rare immune disorder.
Only 1,674 people in the UK have been diagnosed with it in the last 15 years.
It therefore affects just one in about 40,000 people.
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Little Jasper started displaying symptoms with a spiked temperature at first on October 30.
Yet his condition gradually worsened and so he was taken to Royal Devon and Exeter hospital two days later.
After some concerning blood test results and the discovery of what looked like an abscess on his liver, he was transferred to Bristol Royal Infirmary on November 3 for further testing.
And Jasper was diagnosed on November 4 HLH.
The incredibly rare life-threatening condition which in Jasper’s case was triggered by glandular fever virus.
He is still in hospital and undergoing chemotherapy to treat the condition.
Now, his parents, Harri and Tom, of Colyton, Devon, have launched an awareness campaign about the life-threatening condition.
When he was diagnosed she said: “Jasper started spiking a temperature and was a bit under the weather like any other cough or cold.
“By Friday night he was a very unhappy boy so we went to Exeter Hospital and initially it was thought he either had a bit of a gastro bug or his appendix wasn’t happy.
“Whilst he was having his appendix scanned they noticed a mark on his liver that they believed to be an abscess with some concerning blood test results meaning it was suspected that he may have leukemia.
“So on Sunday he was transferred to the Bristol hospital for further testing and went straight to have a bone marrow aspirate.
“Jasper’s bone marrow tests showed some concerning cells although not leukemia.
“Jasper has been diagnosed with something called HLH which has been triggered by the glandular fever virus.
“Jasper is a very very poorly boy.
“He is currently sedated and intubated, tonight he will start chemotherapy as that is the best way to tackle these horrid cells.
“It destroys me to say that there is a chance that this could be too much for his little body and he will be taken from us but everything possible is being done for him and it’s now just a waiting game to see how he reacts to treatment and if his body is strong enough.
“It’s going to be a very long tough road I’m not sure of the practicalities of our life right now nor do I have a clue how to navigate this but I do know our boy is a fighter”
This week Harri said the picture was more promising.
She told Need To Know: “Jasper has responded well to chemotherapy.
“We are still waiting to find out if it’s primary or secondary HLH.
“If it’s secondary he will need three months of chemotherapy and then he will need a stem cell transplant.
“HLH is really hard to initially diagnose as it presents itself as other illnesses which can make it very hard to spot.
“We were super lucky that the consultant on call when we got transferred to Bristol was able to recognise it quickly.
“They haven’t had a case of HLH in Bristol for 10 years which shows how rare it is.
“If it’s primary any cough or cold could restart the HLH reaction until he has a stem cell transplant.
“I would encourage people to join the stem cell register.
“The Anthony Nolan charity is a good place to start.
“I signed up years ago to be a donor for them, never knowing it would be my own son who would end up needing them.”
A fundraiser aiming to raise £5,000 to help the family with costs has nearly reached its target.
Organiser Kerri-Ann Betty wrote: “This young family is in urgent need of support as they are currently having to stay away from home in a hospital with their son, Jasper who is just 5 years old.
“Costs are becoming overwhelming for the family for parking, travelling and day to day needs for themselves and their other young son Felix, just one year old, whose family are doing their best to help look after but this involves a lot of travelling.
“It’s the first time that little Felix has been away from his parents, he’s staying with family members and being taken up to the hospital to visit his big brother, who he adores, as regularly as possible.
“Though this is terribly hard on all the family, Tom and Harri are having to fully focus on Jasper whilst he is undergoing urgent and intense medical treatment.”
It has raised £4,060 so far.
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