Julia Kovdrya, born on the 29th of December 1986
Diagnosis: Long QT Syndrome
Julia Kovdrya’s up-to-date treatment news
The bill for an implantable cardioverter-defibrillator
Telephone numbers of Parents and Volunteers
ATTENTION (20.12.2011):
The fund-raising campaign is closed. The vitally important sum of 14,883 US dollars for A new cardioverter- defibrillator is collected! We're grateful to all of you who has helped Julia!
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Every one of us yearns for being extraordinary. We all want to distinguish ourselves from other people, to be unique and unusual. Teenagers make every effort to show their uniqueness. At the same time there are some people among us who’d trade everything for just being “normal”. Julia Kovdrya belongs to this “unique” group of people…
Video about Julia made by Vladimir Krasnogolovy (6th of October, 2011 Berdyansk city, the Zaporizhia region)
Julia was ten years old when her heart problems began. She faced heart failures during which the heart stops. All of a sudden her heart would start to beat very fast and stop pumping blood around the body. Doctors struggled for Julia’s life in intensive care units and tried to treat her in cardiology departments, but the arrhythmia attacks would not go away. Only in 2005 was Julia diagnosed with long QT syndrome (LQTS). This is an extremely rare inborn heart condition. There are just a few patients like Julia in the whole Zaporizhia region. The electrocardiogram of someone with long QT is not stable. It presents severe and virulent arrhythmias and even cardiac arrests. Unfortunately, this condition is not curable. It’s impossible to prevent arrhythmia attacks. The only solution is to save the patient’s life by reanimating the heart. But then again, the patient should always stay at an intensive care unit to be monitored 24 hours a day by doctors with defibrillators. However, now there’s an opportunity to implant a little defibrillator that can simultaneously play a role of a doctor and an intensive care unit. After this little life-saving device is implanted, it can deliver a jolt of electricity and restart the heart every time it slows down.
The state health programme provided Julia with such a cardioverter-defibrillator in 2005. For the first time in many years the girl returned to a normal life. She finally was able to hang out with her friends, stay alone at home and do thousands of different activities. Julia was free of the constant fear that her heart could unexpectedly stop while her mom, who knows how to keep her daughter alive till the ambulance arrives, was away. There is one catch, however. This vitally important device is battery powered and a battery’s life is, alas, limited. Three years ago the battery charge reached a critically low level. So, Julia was put on the state waiting list for a new device. Three years have passed and there has been no response. The state health programme does not currently give any free devices. The latest check showed that Julia’s cardioverter-defribillator is completely discharged. The device cannot send any saving electrical impulses any more. As a result, Julia’s life is again in danger. Her mom has to keep an eye on her daughter day and night in case of a new sudden heart stop.
According to the world’s statistics for the last decade among people who died from sudden cardiac arrest, around 20% were patients with LQTS. Julia’s case is even more risky. Actually, Julia regularly dies and every time is brought back to life again by her family. Julia urgently needs a new cardioverter!!! One cannot live with this awful uncertainty and fear of a new attack, desperately hoping for an ambulance to arrive in time and the doctor’s defibrillator to be in order…
A new cardioverter- defibrillator for Julia costs 120,000 hryvnyas or 14,883 US dollars. This is the price of Julia’s heartbeats. This is the price of a good night for her family. This is the price of a usual every day joy. This is the price of the life itself. Once, we managed to help the boy with the same diagnosis – Danijil Nazarchuck (in Russian). We succeeded to give this boy a normal life. Let’s give Julia the same opportunity to live a normal life without fear and anxiety! Let’s combine our efforts and give this unique girl a chance to live her life to the fullest! With our support Julia will be unique not only because of her rare diagnosis, but also an implanted, a 300 gramm personal doctor placed in her chest!
Julia at the seafront of Berdyansk. 6th of October, 2011
I’m including a letter from Julia’s mother below:
Here, in the Berdyansk city, at Sea of Azov, my daughter Julia was born. She was always unusually serious beyond her years. I could never imagine that Julia’s carefree childhood would be over at the age of ten when she first got on a drip, lots of injections and cardiograms. Julia was soon able to read her own electro systoles. Due to often cardiac arrests Julia underwent treatment in intensive care units and cardiological departments of Berdyansk and Zaporizhia.
Our calm, bright and sensible girl who was always one of the best pupils in her class, could not attend school anymore. Julia completed her school education at home and then she entered The Berdyansk State Pedagogical University, and became a student of the faculty of economics. Since she could not regularly attend her classes, she got an individual schedule. Her condition was deteriorating, however, and attacks became more frequent and lasted longer. Julia was finally diagnosed with” long QT syndrome, sudden death” in Zaporizhia. The doctors recommended Julia to have an urgent cardiac defibrillator implantation. The Institute of Cardiovascular Surgery of the Academy of Medical Sciences of Ukraine. M.M. Amosov provided my daughter with a new cardioverter-defibrillator free of charge. In 2005 my daughter had surgery. The implanted defibrillator guaranteed Julia security in case of a sudden cardiac arrest by sending a new powerful electrical impulse to her heart.
After the surgery our daughter graduated from the Berdynsk University. Then she completed with distinction two hair dresser stylist courses. Julia actively took part in different competitions that resulted in a number of awards. We regularly went for device examination to the M.M. Amosov Institute. The time went by and the battery got expired. Three years ago Julia was put on the state waiting list for a new cardioverter-defibrillator.
The latest check showed that the battery is totally out of order and now our beloved daughter is in constant risk that her heart could stop at any moment. All our appeals to the Health Ministry of Ukraine to provide our girl with a new device received the same response: There are no free devices available at present. It was recommended we purchase a new device on our own. The problem is that it costs 120,000 hryvnyas or 14,883 US dollars. My husband works as a driver and gets a small salary. I had to quit my job because of my daughter’s disease. We are not able to collect such a big sum of money through our own efforts.
Take a look at the photo of our precious girl, please! It’s not her fault that she has to suffer from this life-threatening condition. She really wants to live. We’re absolutely aware of the fact that the amount of money we need is very large, but even the smallest donation from you could save our daughter’s life. Help our daughter to get her ticket to the future. Give Julia a chance for life, please!
Julia and her parents live in the Berdyansk city, Kirova Street 1\2, apartment 1.
The telephone number of Julia’s mother Svetlana: +380677382661
You can contact Julia at her facebook or VKontact pages.
For further information contact the volunteers of “The Happy Child” Foundation
The fund-raising campaign is closed.
Reports of Donations Received:
(November 2011):
Raised: 14,883 US dollars
Statement of the bank account: 1st of October 2011-14th of November 2011 (Page 1)
Statement of the bank account: 1st of October 2011-14th of November 2011 (Page 2)
