You may be amongst those kennel
owners, who saw the video and photos of my
daughter Jessica when Dr Berge
Minassian was in the U.K. in April.
If that is so, you know that she
is suffering from Lafora Disease, a fatal illness.
So far - I think - a strong will
to live and meticulous care has kept her alive for 11 years
after she was first diagnosed. The
lively child and young adolescent you saw has now
to be turned in bed, fed by
gastro-intestinal tube ( .and how she used to lover her
food!!). She cannot talk ( .. and
how she used to love talking!!). She communicates
with her very expressive eyes and
those eyes are pleading for me to do something.
That something is research.
Why am I writing this to you? I am
writing this to confirm what Dr Minasian must
have told you: you can help by
giving a little blood from your affected dogs and
I want to thank those of you who
have been willing to help.
All that is necessary is a small
blood test - no discomfort to the dog. It will not
cost anything and no-one but we
and yourselves will know about it.
Very few patients are affected by
this disease, so we are very grateful for
the research Dr Minassian is
Besides worrying about the lives
of our children we are also worried that having
to watch our children 24 hours a
day we will be worn down and there is no way
our children can live without our
care. So time is an important factor, the sooner
Dr Minassian finds the erring
gene, the sooner they can be treated.
So, can you help?
Thanking you in advance for your
understanding of this very difficult situation.
Vera Faludi, mother of Jessica
Lafora's Disease Page