Belfast Telegraph

MP joins Terry’s fight against rare diseases

by Natalie Irvine

The grandfather of a terminally ill boy who has two extremely rare diseases is one step closer in raising awareness of his condition at a national level — with the aim of securing further funds to help children in Northern Ireland who face similar illnesses.

Last month, east Belfast MP Naomi Long signed up as patron of the Cavan Tommy Trust Fund (Ireland) after hearing about the plight of seven year old Cavan from his grandfather, east Belfast man, Terry Hoey.

Mr Hoey, a well known resident of Sydenham, said: “We are absolutely delighted Naomi has agreed to this request — when I tell people she is our new patron they can’t believe it — she is a great role model and figure and will be well versed on the topic if it is to be discussed in parliament.

“My grandson Cavan who lives in Cornwall has two rare diseases, XLF and HLH. We have been told by doctors that the average life expectancy for someone with XLF alone is 10 years old.

“There are no cures for them and the chemotherapy treatment he has received to help him get better has left him brain damaged.”

Terry initially contacted Naomi Long to get help in raising awareness of the condition. “She sponsored a rare disease day at Belfast City Council earlier this year and arranged for me and my wife to meet the Health Minister to discuss the current situation in Northern Ireland — from there we found out that doctors in this country had no experience of recognising and diagnosing the diseases Cavan has.

“A result of our meeting is that doctors at the Royal Victoria Hospital now have links and share information with the doctors at the Bristol Royal Hospital for Children where Cavan is treated.”

Terry also discovered that Northern Ireland has no CATS (Children’s Acute Transport Service) ambulances which offer intensive care to seriously ill children in transit between hospitals and is keen to raise the funds to buy one.

He says the money raised here will stay here whereas some of the money raised in England may go towards Cavan’s treatment. “There is a possibility he may have to go to America for further treatment that has not yet been trialled in the UK. The drugs he is currently taking are not helping enough to reduce the infection levels in his blood to zero,” explained Terry.

“But Cavan is a wee fighter and has just started school again after spending a year in hospital. I doubt he will learn much though — he loves dressing up too much and will probably tell more stories to the teacher, than the other way around.”

Belfast Telegraph


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