The Northern Ireland grandfather of a six year old boy fighting a rare blood disorder last night appealed for the public to support a trust fund set up to help him battle the condition.
Cavan Hoey, who lives in Cornwall in England, became seriously ill last year. He was originally diagnosed with glandular fever but is now battling for his life.
Cavan didn’t recover from the glandular fever and following further tests doctors discovered he had a rare blood disorder, which only affects around 100 people worldwide.
The little known condition known as XLP, HLH, EBV will result in Cavan needing a bone marrow transplant — if they can find a donor.
Recent scans have shown that his brain has been affected and he is having chemotherapy which involves injections into his spine.
Now, his grandparents, Terry and Maureen Hoey, who live in the Sydenham area, have set up a trust fund to aid his parents Debbie and Jason — who is originally from east Belfast — through Cavan's illness.
Mr Hoey said he also hopes to raise awareness about the condition.
“As the grandparents of Cavan we have decided to set up a trust fund for him as we cannot be sure of the outcome of the XLP,” he said.
“His doctors are giving him chemotherapy by lumber puncture to kill off lymphasites in his brain. We do not know what effect this will have on his brain.
“Our grandson has lost an inconceivable amount of weight and the drugs he has to take to try to fight off the infections are incredible.
“We rely on medical research to tackle this disease to help young children fight it with better odds than they have at present.
“When we see our grandson and how he is now it just rips your heart out.
“The family have been going through this since September and we just have to deal with it hour to hour.
“At one point Cavan is well enough to go to the Clic Sargent House then within an hour his condition deteriorates dramatically. It has been an emotional rollercoaster.”
Mr Hoey said his grandson has now lost his immune system but is putting up a brave fight.
“He is a special wee boy, whose body is being put through so much.
“Our whole family would like to thank the Bristol Children's Hospital for all the care they are giving our grandson at this time and would also like to thank all the nurses for showing such care to our grandson and to the doctors who are treating him at this time.
“We would ask anyone reading this to help and support this cause either in funding or letters of support.”
The family have also set up an e-petition online on the Downing Street website calling for Prime Minister Gordon Brown to invest more money into researching the condition.
Anyone who wants to help to donate money to help the Hoey family financial assistance can contact Jenny Gendall on 01208 79659 or via the Cavan Tommy Hoey Trust, 86 Parmaston Road, Sydenham, Belfast, BT4 1QD.
Or log onto facebook.com/the.cavan.tommy.hoey.trust
Originally published on belfasttelegraph.co.uk. Written by Victoria O’Hara.