Glebby living with William’s Syndrome (Sindrom Williamsa)

Glebby’s Father emailed me his story last year and I thought I’d save it for the last day of the 28 Days = 28 Real Life CHD Stories because they are from Russia and I wanted to show that CHD’s affects anyone and it doesn’t matter where you live in the world.

Huge greetings from Russia to our friends!

I correspond with parents of children with SW (280 - 300 person from the different countries and continents). It is very interesting, but very complex - necessary to all to translate the letter on other language, and my electronic translator sometimes translates phrases well, and it is sometimes bad. Therefore in advance I ask a pardon if the letter is badly translated.

I am 38 years old and my wife, Kira is 32 years old and our son Gleb who was born on 11.12.1998 is 11 years old. Gleb was born on time by c-section due to lack of oxygen.. Gleb is our first child and he weighed 2700 (small) and his height was 48ms. At birth he was at once defined to have a heart disease (he had the usual symptoms that defines children with heart problems. Gleb was diagnosed with William’s Sydrome.

We bypassed all central centers and hospitals with this problem and registered in ??????????? at the Cardiological Center (the wait for the professors and everyone to give us a diagnosis and operation were not solved. But to us, Carry, the main children’s cardiologist in Moscow had suggested to perform the operation in the republic of South Africa (in professor Barnard’s clinic). Professor Barnard is a well-know person who was proposed for a Nobel prize in 1968 but did not win. He was proposed for the Nobel prize for being the first to have made changes with the artificial heart in his clinic in Capetown. Professor Barnard is known throughtout the world.

At the clinic in Capetown, they do one of the best operations on children’s hearts and once a year, through a program they operate on a child from any country. In 2002, it was the turn of our country Russia and the first person to be offered this chance in Russia refused and so it it was offered to our son Gleb. We thought a little about and agreed.

To understand that for us in our country is it necessary because we do not have the equipment, money or specialists. And here, this grandfather (the professor to Barnard, who is 75 years old) arrived in Moscow to operate on our son. My wife and son were then flown to South Africa.

We met them there perfectly, we were shown on the TV and were wrote about in almost all the newspapers (with clauses about Gleb). In the streets (after operation when they walked to them ordinary people approached and all congratulated on Gleb and his mother on the successful operation. The wife has got acquainted with a family who reside in Namibia (they originate from Holland/Netherlands) and to them performed operation to the child. To it was in half a month that they have made also perfectly - we now with them we are called back. Having arrived in Moscow we received news from professor Barnard had died (the wife with the grandmother) We cried for 2 days but we shall always remember this person becuase he has given Gleby a second chance at life and against our doctors.

Now Glebby’s heart is ok. We sent blood for examination in Austria and when we received the results it was to confirm that Glebby has Williams’ Syndrome (a rather rare disease) and anybody in a sort did not see these problems and in Russia to us it put - only by going on the appearance of the child.

Gleb’s growth is 140 (rather high), his weight is 24.5 (thin ) but he eats plenty but not bad fruit in genearl and he very much loves all dairy products and black bread eats itself (rather accurately). Coordination of movement and dressing and undressing is rather weak. Speaks (only words-offers practically much does not make a lot of sense). Know the colors well and is able to consider up to 1000, very much loves music and cartoon films. Very tender, indulged (ours all allow-not abused) and artfully - now he has begun to abuse on the sly if he does not listen.

I would love to keep in contact with people from around the world. Except for work I am able to communicate as much as possible. Again, he is my miracle.

Your friends Sergey, Kira, Glebby.
We transfer huge greetings and kisses for all your family.

Sergey also writes:
I apologise for my English, it is not my first language.

Huge greetings from Moscow.

It is all very much is interesting to us.

Write - we shall correspond, and to share our victories about (Williams’ Syndrome)

Wrote by Sergey
February 2010

Sergey has kindly given CHD-UK permission to use the photographs on this page.