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.
C/o 86 Palmerston Road
Sydenham
Belfast
Northern Ireland
BT4 1QD
Do not Read
This And Do Nothing Do Something To Help Our Fight
Leave a comment