This Is Our Little Super Hero Cavan After A Three Hour Operation On His Nose To Clear An Infection

This is a picture of our brave little grandson who is fighting XLP,HLH,EBV, in Bristol Childrens Hospital in England. At the age of only five years old our little grandson fights these dreadful diseases  that are infecting his little body. when he would visit us on holiday he would say he was a super hero.
Cavan is like any other little boy of his age running around in a Spider man suit zapping everyone in site. We cannot understand why these diseases have picked on him, we have been told that XLP only effects one hundred families world wide. when we went to Bristol Hospital to see him we found it all very hard to take in.

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.
XLP is a genetic disease could it be tested for before birth and the gene fixed before birth, this must be possible we can do so much but we cannot solve this problem why?
when you see and live with the results of this disease and the uncertainty of it all, and the impact it will have on our grandsons life. We have to ask how this can happen in a world that is so far advanced and has made so many medical achievements, but this gene cannot be cracked.

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.  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 We ask the readers of ZIMBIO to Lobby their drug manufacturers to look at XLP and to help us get the word out regarding this disease please when you read this article make up your mind to  join with us in a search for a drug that will wipe this disease of the face of the earth .

Our grandson had glandular fever and seems to have been the trigger for it how many more parents in the world could be at risk of this disease and do not know they are passing it on to the boys in their families. as XLP only attacks boys and is passed on by the mother. Help us to help them make

XLP known throughout the world and press for research.
                                                                              

                                                                                     The Cavan Tommy Hoey Trust
                                                                                       C/o 86 Palmerston Road
                                                                                                 Sydenham
                                                                                                    Belfast
                                                                                            Northern Ireland
                                                                                                   BT4 1QD
                                                     Do not Read This And Do Nothing Do Something To Help Our Fight