Yana serbulova the sick heart withIngram long QT. In people with this disease are at high risk of sudden cardiac death. The doctors can not begin to heal Ian, not yet determined type of the syndrome. The girl urgently need molecular genetic analysis, but free it is not done, and in a family where only the father works, you can not pay for the study.
- “He was lying on my shoulder, like a whip, and didn’t even cry”
- “Don’t you worry, it is not the same as before” – mother came out of intensive care and began to cry
- In some gene broke down and now She is sick always
- Recently Anya pulled out a tracheostomy and was breathing on her own
- In Sochi Vitalina can swim with the ventilator
Ian went limp in the arms of my mother, hung to death
Hey! My name is Ian Serbulova, Boyko tells me skinny girl with huge eyes. Jan moving, alive and active. As the mercury. Think now I jump up and start dancing. Or running, or spinning, in General, the “head-standing”. Do everything you normally do high-spirited eight-year-old kids, forcing the whole world – parents, grandparents, uncles and aunts – to spin around and say: “Wait, where you goin’, yeah just a minute!” All that I now can’t do because her “heart”.
– Physical stress, emotional stress, loud noises, lists Elena, Yana’s mother, the doctors imposed restrictions – Yes, even NAPs – all could trigger cardiac arrest and… Elena pauses, looking at Yan suddenly silent, and unspoken word “death” remains hanging in the air like a stopped swing of a giant pendulum.
It all happened suddenly. Until the spring of this year, Jana’s parents were not even aware that my daughter had a heart condition.
One morning Elena was brushing her long hair Ioannina and suddenly she went limp in my mom’s hand and hung to death.
Helen grabbed her daughter, put her on a bed. Raised legs, made sweet tea. Jan like and did not lose consciousness, but for about 10 minutes it became so bad that Elena and Sergey, Yana’s father, completely confused.
A similar condition could be attributed to fatigue, the first symptoms of SARS, pressure, magnetic storms, etc. But Yana’s parents got worried and decided to investigate the child to rule out anything more serious… And not expelled.
Hospital, suspected heart problems and the direction to Moscow (Serbulova live in the city of Millerovo, Rostov region). Three weeks Ian was in the cardiology Department of Pediatrics NICKY them. Veltishev, three times she did the halter heart – the method of continuous recording of ECG with the help of kardioregistrator and was finally diagnosed with long QT syndrome.
We urgently need to find “failure” in the genes
Yanino disease included in the group of genetic diseases of the cardiovascular system. One of its consequences – high risk of sudden cardiac death (SCD). In other words, it is a disruption of the heart, which increases the risk of a sudden stop. If urgent resuscitation is not started in the first minute, a chance to return to life. In 90% of cases death occurs in the night during sleep.
The doctors asked Elena and Sergei on cases of sudden cardiac death in their family. But none of them remember failed. The whole family Serbulova put Holter and Elena and Sergey, and younger daughter, two year old Anya. But the disease were only found in Yana.
Today managed to identify 12 genes, mutations in which lead to the development of long QT syndrome. What type of syndrome Yana is not yet known. Need pay-genetic analysis and clinical eczane sequencing to find “failure” in the genes.
Elena and Jana was discharged from the hospital and came home. Money on the analysis Elena and Sergei is not. Sergey works in an industrial complex in growing ducks. Elena does not work, sitting with the girls.
Without analysis, the doctors can’t prescribe adequate treatment, therapy or surgery. Of course, they made recommendations: I can’t do sports, run a lot, to overwork, to be frightened, to sleep during the day. But these suggestions do not help to cure or arrest the disease. They gave to parents was not so bad that they continually thought about the fact that the daughter’s heart at any moment can stop. High risk of cardiac mortality… We need to rescue Jan.
Fund “Pravmir” helps people with unknown diagnoses to perform an expensive genetic studies to accurately determine the disease and to get appropriate treatment. Help can you by donating any amount, or make a regular monthly donation of 100, 300, 500 rubles and more.
Go to the page collection at the Foundation’s website