Hi!

I am Csilla from Hungary, my son, Lőrinc (2 years old) has Weaver
syndrome, which had been diagnostised one year ago. Unfortunately we
do not know a lot about his disease, although it would be very
useful to know, what can we expect by schoolage and adulthood.

Lőrinc's weight was 5.15 kg (11.3 lbs) and he was 62 cm (24.4 inch)
when he was born. He is 2 years old now 20 kg (44 lbs) and 105 cm
(41.3 inch). Organic disorder has not broken out yet, we regularly
carry him to onkological and cardiological examinations.

He has developmental delay in his moving, but - thanks to developing
activities –he started to walk by age 15-16 months. He is walking
well by now, but he is clubfooted and it still causes a bad sense of
balance, his knees are trembling a little during walking.
He is also slightly delayed mentally. I can tell, that till his 10th
month he was compeletely passive. Then we begin special exercises of
developing nervous system, which helped a lot to begin his moving
and intellectually, too.
He understands superbly our speech, but tells only two words in our
language and four-five in his own language. His attention was very
low at the beginning, but - thanks to the developmental training -
he is improving a lot. He got more cooperative and his interest is
more engaged by a few toy.
He is very nice and devoted child, he loves to be in company,
especially with children. He is not house-trained yet.
I upload some photos of him.

I have a lot of questions, if I could talk to someone, who knows the
features of this syndrome and could tell me for which signs I have
to pay attention.

I have just read somewhere on this page, that somebody knows the
mail-box of Dr. Weaver. May I write to him? Where he is living? Is
it worth to travel to him for an examination from the other side of
the world?

What is interest me a lot:

- For what can we prepare in mental respect, what kind of
(special) school we should enrol him later? How high intelligence
can be expected?
- Which are the fields, where he can be more talented ( now he
loves music, moving on it well, everything is interests him what is
making sounds) and what are the fields, which will be more difficult
for him?
- What are the illnesses, which they having more often, what
kind of examination they need regularly?
- What kind of developments do you advice?
(speech ,independence and question of being house-trained is actual
momently)
- Later we would like him to do sports. In what kind of sports
he can be talented? (Where is not a big problem that his moving a
bit clumsy, but his large strenght and figure can be an advantage.)
Which is what you were trying and worked well?
- Is there any kind of registration or database exist, where I
can check if there any other child in Hungary or nearby who has
Weaver syndrome?

Now I am int he 12th week of my second pregnancy, we expect our
second baby in January. Altough as I know this is a sporadical
hereditary syndrome, after all I am worrying a little.
Do you also know so, can't repeat itself in one family, don't you?

Thanks for you kind answers, best regards,

Csilla.