Palmerston Residents Association Chairman Terry Hoey Says Our Grandson Is Fighting XLP An Extremely Rare Disease Affecting Only Males He Is Also Fighting HLH And EBV

  As chairman of the Palmerston Residents Association I thought I was a Real Fighter for good causes  I did not for one moment think I would Be fighting for a cause that would be so close to both my wife and our family's heart our grandson has XLP,HLH,EBV,.During the past few weeks we have been in England to be close to him and his mum Debs and dad Jason and his sister Maeve they all live in Cornwall in a small town in Bodmin,our grand son had been ill for some weeks we thought he had Glandular Fever and started to get worse.

My wife and I travelled over to England to see him we had been in constant contact with our son on the journey down from Stranraer to Cornwall our son rang us and told us he was being moved to the Children's Hospital in Bristol as the Hospital in Cornwall felt that he may have HLH,in its self this is a life threatening illness but at that time we were not aware  just how sick our grandson was when we were on the Motorway we passed his Ambulance taking him to Bristol Hospital,we did not think over the next few weeks just what a roller coaster we had got on.

Our grandson has been fighting a battle his mum and dad was told at one time that the next 48hrs would be crucial to him as he had had a seizure we were then told that he had the EBV,Virus as well it took some days before the Hospital could confirm that he had XLP this disease is thought to affect less than 1 child in a million due to this doctors know little about the disease our little grandson is a real fighter he has to take so many drugs to enable his little body to fight off the disease who would have thought that something like glandular fever could trigger this off.

 

How Common Is XLP

This disease is extremely rare 100 families with XLP are known world wide the cause of the condition was only found in 1999 it is caused by a mutation or even a mistake in genes the treatment at the this time is anti- viral medicines and immunoglobulin therapy or steroids the child may receive a variety of treatments .Bone marrow transplant is the definitive treatment of choice 70% of individuals with XLP die by the age of ten years without any treatment. However, as we are learning more about the Disease they are identifying adults with milder forms of the condition

(Great Ormond Street Hospital)

 

I have supported many causes since setting up the Residents Association and I feel that more has to be done to research into this disease and that XLP should be highlighted and I intend to do just that,as Jason and Debs and Maeve live in England and we live in Northern Ireland our family members intend to set up a Trust Fund for Cavan to help with family support for them we have also received information that Bodmin Community also want to set up a fund to support them.  We hope to link with them to enable us to raise funds for  { The Cavan Tommy Hoey Trust } we would also like to Mention the Support that has been given by C L I C  in Bristol as they have been a great support to Jason, Debs And Maeve at this time. 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 to

The Cavan Tommy Hoey Trust C/o 86 Palmerston Road,Sydenham,Belfast,Northern Ireland, email terryhoey@ntlworld.com