Courage to Shine Editor:  Today we have a story from a young mother, Natalia Mayorova, from Moscow, Russia.  Who’s love for her daughter, has turned that love into a project that has helped many families all over Russia and around the world.  Sometimes in life it is just the little extra things that can make such a positive impact on others.   Thomas Exler, founder of Courage to Shine, had his first contact with Natalia a few years back, when she was trying to help a young lady, about a year younger than she was, born with bladder exstrophy from Siberia, Russia, find the resources to have corrective surgery.

Mother’s Love for Daughter Has Helped Many Families All Over Russia

by Natalia Mayorova

“No man is an island, entire of itself; every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend’s or of thine own were: any man’s death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bell tolls; it tolls for thee” — John Donne

Hello everyone! My name is Natalia; I am from Moscow,Russia.

The birth of my daughter

Six years ago, when I was 22, my daughter Victoria (Vika for short) was born with bladder exstrophy (BE). I had not known about her condition before her birth and it was a big unexpected surprise for all my family.

We were very lucky to get to one of the leading surgeons in Russia and at five days old, she had her first surgery – the doctor made everything very-very good, but unfortunately Vika’s bladder didn’t grow with time. And that is why, when she was three years old, we agreed for another surgery – bladder augmentation and Mitrofanoff stoma.

We made that surgery abroad – in Serbia – by an excellent surgeon – the late Sava Perovic and his team. The surgery was performed perfectly and we are very pleased with the results.

Our daughter leads a normal and happy life – she attends a kindergarten, dance-classes, drawing classes and preparation for school. She has good friends of her age, and the fact that her urine system’s anatomy differs a little bit from that of other children doesn’t make her feel different inside and doesn’t make any big obstacles nor to her or to my family, and I hope it will not.

Acquaintance with other bladder exstrophy families

From the very first hours of my daughter’s life I knew that we were not unique.  It so happened that three hours before Vika’s birth a boy with the same rare condition was born in the same maternity hospital – so they told me. All the doctors who worked that day were shocked, because they had never faced two cases within three hours born with bladder exstrophy.  A little bit later we got acquainted and became friends with that boy’s mother; we were treated by the same doctor.

When Vika was six months old we were at a hospital for her routine examination and it was at that time when I met a girl – she was about 30 years old then – who was also, born with the same diagnosis. That acquaintance radically transformed my consciousness – there I saw her, so beautiful, so young and full of energy, so optimistic, with good results in treatment, very successful in life, there she was – a real adult – it affected me so positively!

At the same time, I was reading the book published by the Association for the Bladder Exstrophy Community (ABC) (USA) “Living with Bladder Exstrophy” and reading all the information on their web-site. (http://www.bladderexstrophy.com/) – all those wonderful discoveries turned out to be a real revelation for me.

Decision to make a forum and a site

From the very beginning when I realized how lucky we were to get to the best Russian surgeon, but I thought about other people in my country, which may not be so lucky. Very soon my fears were confirmed as I met people who suffered from the incompetence of local doctors, rudeness and even aggression, in some cases even the diagnosis was not made properly – people lost precious time!

The other big problem was that local doctors didn’t (and some still continue this practice) direct such patients to the central clinics, where the malformation can only be treated, but they operated themselves – as you can guess most of such surgeries failed and patients lost not only time, but also the chance for the best results in their future treatment, cause the first surgery predetermines a lot.

Moreover there was indeed absolutely no useful and modern information in Russian (except a page on the site of our doctor – it gave real hope) on the internet, which is a very important source of information now. All the articles given in Russian in 2006 contained a very pessimistic prognosis and described old approaches in treatment.

Because of that and inspired by the Association for the Bladder Exstrophy Community (ABC), an idea of the necessity of making a web-site devoted to bladder exstrophy settled in my head.  I developed it almost for two years and finally in spring of 2008 I launched the first Russian forum, totally devoted to bladder exstrophy.  I tried to collect all the available information I could find – translated useful articles, ABC materials and so on.

Very soon the forum found its audience and we built a fine structure where people could speak easily, communicate with each other, share their experiences, give advice, publish useful and important data about the treatments and doctors, and to support each other. It has become very useful to each of its members.

When I started the project I thought: if it would help even one person, if it would change even one life for better, my efforts won’t be useless. But now I know for sure that it helped not only one person but much more, and I am really happy that we live in time when such opportunities of making a public site are available to everyone.

After two years of constant work we were lucky to meet a person who has made a web-site for our forum, contributed much to its development and, now continues to be our web-master. Later the site and its forum were united and now they are located accordingly: http://bladderexstrophy.ru/ and http://bladderexstrophy.ru/forum/.

We were also very lucky to help two patients raise funds for their surgeries abroad, because they could not afford such surgeries by themselves.

The future

I don’t know what will happen in the future, but I really hope that everything is going to be very good.

Unfortunately I can’t continue giving so much time to the web-site as I did before, but most of the work of collecting the needed information has already been made, and I try to support the work further.

In my family everything has taken its normal course.Victoria grows up; she also has a one-year old brother, whom she loves tenderly.  Now we are waiting for a third baby.  Life goes on!

Special thanks to Thomas Exler who has inspired me in writing this essay.

© Copyright 2012 Natalia Mayorova and Courage to Shine

If you would like to contact Natalia, please do so by sending an e-mail to contact@courage-to-shine.org and in the subject line put Natalia Mayorova, and we will gladly forward that e-mail to her ASAP.