Hi,
My name is Julia, I am 32 years old. I live in the town of Tara in Omsk
region of Russia. Our son was born in January of this year. We decided to
call him Ivan long before his birth, in honor of the man who saved my
husband's life during the first Chechen war.
After my son was born, he cried, but then suddenly stopped breathing. After
8 days at the local hospital, he was transferred to Omsk, 300 km away from
our hometown (Omsk has better hospitals). The doctors have run multiple
tests on Ivan, but could not find the reason why he cannot breathe on his
own. We were referred to a genetics specialist and he suspected a rare
disease, Congenital Hypoventilation Syndrome (which means that a child stops
breathing in his sleep). Ivan's blood sample was sent to the Medical
Genetics Research Institute in Tomsk for genetic testing. They determined
that Ivan had a genetic mutation and his diagnosis was confirmed. This means
Vanya is destined to stay on artificial lung ventilation for the rest of his
life. I can not describe in words what I felt! Until then we hoped that
our son will start breathing on his own one day.
I just about lost all hope when one good young woman called me and said that
AiF newspaper recently published a story about a girl named Inna
with a similar problem and about breathing pacemaker that can help her. Now I know
my son has a chance to grow and develop like all other kids. The surgery to
implant the pacemaker can be done at a clinic in Novosibirsk (Children's
Municipal Clinical hospital No.1) from the funds allocated by government,
but we have to buy the equipment ourselves. It used to be unbearably hard
to look at my son's eyes knowing that I cannot help him, but now it is even
more painful, because I know how to help him but I have no money!
I don't know what to tell Ivan's sister when she asks why she has a brother
but she has never seen him.
The breathing pacemaker that will give Ivan a chance to live a normal life,
costs $65,142. Please help us buy it!
Update as of January 17, 2010.
On January 11th Vanya and his mom traveled to Munich for tests
based on referral from Health Ministry. Based on the test results,
Vanya's treatment will be determined.
Update as of February 15, 2010.
We are doing well so far and operation is planned for the
end of the week. Vanya feels well and has grown up quite a bit!
Vanya's mom
Update as of March 13, 2010.
The surgery was successful. Yesterday, the stitches were removed.
Vanya feels well. I am very happy. Vanya's second birthday
is now on March 3!
Vanya's mom
