Dear Friends
We thought you would like to hear news
of Nastya; how the appeal is
progressing; and details of her
treatment so far.
Nastya travelled
to West Sussex at the end of April with
her Mum and Valentina, one of our
co-ordinators in Minsk, and stayed in
Findon to make it easier for travelling
to London.
Anxieties
about how they would cope with
the strangeness of it all were
rapidly dispelled. Nastya coped
wonderfully. Three year old
granddaughter Ezelle was the
perfect icebreaker.
Communication was no problem.
“You have the red one Nastya and
I’ll have the yellow one,”
instructed Ezelle.
replied Nastya. They
played together as if they had
known each other years and she
loved her English ‘Dedushka
Terry’.
We were welcomed
everywhere we went. Nastya and Aliona
experienced warmth and welcome from
everyone. Even the local priest Fr
Chris welcomed them with
in Russian!
With Prof Hayward GOSH
The Great
Ormond Street assessment was
very successful and timely.
Although it wasn't an easy two
weeks. We visited nine different
specialist consultants in and
around London and the travelling
was tedious and tiring. Nastya
was poked and prodded and
examined from every angle. The
CT scan under sedation was
particularly stressful.
But the
diagnosis was confirmed. There
is pressure building in Nastya’s
brain and complex craniofacial
surgery will be required. First
though, she has had the simple
things done. In November she had
her tonsils and adenoids removed
in Belarus. I am told that the
Belarusian surgeon had never
seen such enlarged adenoids!
As a day patient GOSH
While she
was in west Sussex she also had
spectacles prescribed for a
significant astigmatism and a
generous local optician pulled
out all the stops to get the
prescription made up quickly.
She is now so proud of her
specs!
We are so grateful for all the
skilled specialist support from
so many people and particularly
for the diagnostic letters
written by Prof Hayward and his
colleagues.
Belarusian
clinicians have also been very
appreciative of the amount of detail
that was provided. The Professor has
asked to see her again this year to
assess the extent to which the removal
of the adenoids has relieved the
pressure and delayed the necessity for
immediate action. Apparently it would be
good to delay the surgery as long as
possible as it will be extensive and
complex.
We had hoped we
would be able to visit all Nastya’s
friends and supporters in Cardiff but
unfortunately this was not possible. The
appointments schedule left very little
space for an additional trip but we are
hoping we will be able to do the journey
when she comes again early in the New
Year.
And we do need to
sustain the fund raising. The last trip
cost just under £5,000 with fares and
fees. The fund raising was phenomenal.
So far we have raised £13,064 to which
we will be able to add almost £1,700 in
gift aid!! We send a huge, huge thank
you to all our magnificent volunteers
who have worked so hard to raise the
money needed. But we must not lose the
momentum. The cost of treatment at GOSHS
is frighteningly expensive. We will need
thousands of pounds more if Nastya is
the get the treatment she needs. And she
is such a special little girl. Everyone
loved her. A documentary programme
tentatively proposed by the BBC would
almost certainly help so we have our
fingers crossed.
THANK YOU EVERYONE AND A VERY, VERY
HAPPY NEW YEAR
replied Nastya. They
played together as if they had
known each other years and she
loved her English ‘Dedushka
Terry’. 
in Russian! 
