Our Christmas Wish
Kyriakos is 11 years old, lives in Cyprus and has Oculo-Dento-Digital
syndrome. This means that he cannot see. They cannot treat this in Cyprus, but can in the United Kingdom. Kyriakos' parents work all the hours that God gives to be able
to afford this imperative treatment.
This has been our 'Wish' for 5 years now and we are pleased to
report that Kyriacos is making great progress and is doing great at school and
is proving to be a budding musician. He has come so far now that 2 years ago he
was able to tell
you his story himself:
Hi, my name is Kyriacos,
I live in Cyprus and I am nine years
old. I have a very rare syndrome called Oculo-Dento-Digital syndrome. There are
only fifty people in the world with this, so you could say that I am quite
special.
I was born with a cleft palate, webbed
fingers, missing enamel on my developing teeth and sparse hair. These were not
so bad and have been sorted out. I have had many operations, about ten I think.
But my big problem is my eyes. They have not developed properly and so I am
blind. I have a condition, which is called Glaucoma, which means I have high
pressure in my eyes. I can see light and dark.
Five years ago I went to Great Ormond Street
Hospital four times for treatment for the Glaucoma. The operation was a success
and the pressure was halted. In January of this year I again went to the UK
where I had another operation for the Glaucoma. In total so far I went to
England three times this year. If I do not have this treatment I will go blind
completely. My consultant, Mr Nichal, gave us some good news. I have to go with
Mummy back to Great Ormond Street next year and if the pressure in my eyes is
good they will give me a corneal transplant. I won’t be able to see as a
normal person but I will be able to see shadows. For me that will be fantastic.
I also have to have some treatment on my
teeth so that I do not lose them. They will all be capped. So as you can see I
will be quite busy in the next year.
I would really appreciate it if anybody can
help my family with a donation. It does not have to be a great amount, every
little helps. And if you visit us here in Cyprus you are very welcome to come to
my house and meet me yourselves.
With Love
Kyriacos.
October 05
Donate here
This is not a scam, we know because Andy (
his father) works for us doing transfers. (We have asked the bank for a letter
confirming this sad state of affairs and are providing more info
below)
Our wish is to be able to help
this family cope with financial burden even if we can't help with the emotional
one.
We would welcome our friends, clients and
supporters to consider a donation.
Please make Cheques payable to :Androulla
Louca (His Mother)
Bank of Cyprus. Kamares , Larnaca.
Account number 057105001411
Or to make a donation by
credit card, please fill in this online form.
It will not be
deducted until we have confirmed with you by e mail.
Androulla's Letter (His Mum)
Our son, Kyriacos, was born on 19/9/96. He was
full term and he weighed 3.150kg. Our ages
at the time were 35. My pregnancy was trouble free
apart from a slight bleed at the beginning &
also a virus at three months gestation. The virus
was not bad, just being sick & general aches &
pains. He is our fourth child, all the others are normal.
He cried straight away & just needed a few puffs of oxygen & a bit
of warming up. The midwives
& doctors noticed his hands immediately &
also his cleft palate. They then realised that his eyes
were abnormal. He was taken the next day to the
Makarios III Hospital in Nicosia because he could not feed properly. He stayed
there two weeks to establish that no internal organs were affected.
He was placed under the care of our neurologist, Dr Violetta Anastasiadou, &
our geneticist
Miss Elena Spanou.
After a few months he was diagnosed with Oculo-Dento-Digital syndrome.
I will now give you a list
as to what Kyriaco has wrong with him:-
SPARSE /FINE HAIR
SMALL NOSE
LOW SET EARS
SMALL CHIN
SMALL TEETH/ENAMEL ABNORMALITIES (CAPPED TO PROTECT HIS TEETH IN
OCTOBER 99 )
BOTH FONTINELLES (FRONT & BACK) WERE OPEN BUT HAVE NOW CLOSED
NORMALLY
MICRO CORNEA
MICROPHTHALMIA
GLAUCOMA
HYPOTELORISM
MEMBRANE OVER THE PUPIL ( I AM NOT SURE IF THERE IS MORE ON HIS EYES, BUT
IF NEEDED I COULD GET A REPORT FROM THE DOCTORS)
NARROW SHOULDERS
CLEFT PALATE (SOFT) (SUCCESSFULLY CLOSED JANUARY 1998)
SKIN SYNDACTYL OF FINGERS ON BOTH HANDS (THREE ON THE LEFT/TWO ON
THE RIGHT, AWAITING SURGERY)
HERNIA ( LEFT TESTICLE, OPERATED ON JUNE 1997)
TRANSLOCATION OF TOES ON HIS FEET
Although Kyriaco
is very visually impaired it seems , thank God, that he is
developing normally
Neurologically. He
had a test at the Cyprus Institute of Neurology & Genetics on
his optic nerves.
It seems that they
are working to some degree but the nerves have a dysphasia. As of
yet they cannot tell us how much vision he has because he is so
young.
We have now been
to England three times. They told us that he can only see light and
dark and that at Present
there is nothing that can be done for sight. The consultant said
that we must be positive as in the future maybe something can be
done. In October he had lazer in both eyes to alleviate the pressure
in his eyes which will stop him going completely blind. At present
the pressure is under control but he will have to be monitored
closely as it can return. In January we will be returning to England
for a further check up.
I hope this
information will be of use to you.
Your truly
Androulla Louca
Make
a donation
03/12/2002 Update
Hello my name is Androulla Louca. I am the
mother of Kyriaco. First of all I wanted to thank everyone who donated through
this web site and also to Armata for all their help.
This is an update on what has happened over the
last year in Kyriacos life.
This time last year Kyriaco had the first of two
major operations to separate his webbed fingers. He had three webbed fingers
on the one hand and two on the other. The operations were carried out
here in Cyprus by an excellent micro-surgeon specializing in limbs called Dr
Alkis Alkiviades. His little finger on the hand with three webbed
fingers was separated on 10th December 2001. There followed three months
of outpatient appointments to change bandages and check that all was well.
The result was fantastic. In March of 2002 the second operation was
carried out. This time both hands were operated on simultaneously.
Again it took three months of coming and going to hospital (about 25miles each
way) twice a week.
We thought it would be very distressing for
Kyriaco but he sailed through this with great courage and a keen sense of
humour. The fact that both his hands were bandaged did not stop him from
leading a fairly normal life. The results are 10 wonderful little
fingers. We were lucky he did not require physiotherapy as his joints
are very good. When he is about 15yrs of age he will need an operation
to straighten his fingers out.
The only thing left now are his eyes.
Kyriaco if very visionaly impaired. He can only see light. Again he is
an inspiration to all who meet him as he is a very bright child and also very
happy. He is having treatment for glaucoma (eye pressure) and
with any luck in the future he might see.
We have used your donations for all our traveling
expenses. Also I cannot work
because of all his hospital appointments which
take up alot of our time.
Our main aim is to save for any future treatments
that may arise to help him see.
We have contacted America through a relative that
went there recently for an operation and were told that the treatment
that Kyriaco is having is fine and it is very important to keep his optic
nerves alive. Also we live in an apartment on the first floor so again
any donations will be saved so that we can move to a ground
floor house.
Again, let me thank Armata for their help and also
to everyone who has donated,
and if anyone of you are ever in Cyprus please
feel free to come and meet Kyriaco.
Thanking you
Androulla (Kyriacos' mum)
Our phone number is +357 24 665408 Fax +357 24 627489
Postal : P.O. Box 40218, Larnaca, Cyprus.
E-Mail : info@armata.net
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Revised:
April 23, 2018
