Hello! My name is Julia. Our story began on October 5, 2010, when our long-awaited daughter was born. At birth she weighted 2850 g and was 52 centimeters tall. When Marusya was born, her Apgar grade was 9. But on the second day after her birth she suddenly stopped breathing and was urgently transferred to the resuscitation department for artificial lung ventilation. A little bit later Marusya was put at the resuscitation department for newborns at the Tushinskaya hospital in Moscow.
It was found out that Marusya breathes when she doesn’t sleep but doesn’t breathe when falls asleep. It was most terrible news for us, we didn’t believe that it was possible and hoped that doctors could help and her state would eventually change. But whatever tests the doctors took they didn’t manage to find out the reason why she stops breathing while she sleeps.
After we consulted with geneticists they assumed that Marusen’ka has a rare disease – the inherent hyperventilation syndrome. To confirm or decline this diagnosis our baby’s blood was sent for testing to the Molecular Genetics Centre where the diagnosis was confirmed.
I am not going to tell you how we felt and what we went through when we understood that Marusen’ka wouldn’t be able to breathe on her own. I can neither clearly express what I feel now, as from the day of her birth and till now - the whole of her short life – my baby lived in the resuscitation of the Tushinskaya hospital. And all this time overcoming my constant grief I have been making my best to find the way out and believing in miracle.
From the internet forums I found out that there was a clinic in Germany that had been treating children with such problems for many years. They perform surgeries to install the breathe stimulator. After this implantation a child can live with normal life, and no longer be in the hospital in the resuscitation attached to the artificial lung ventilation. I managed to get ahold of the intermediary service as the hospital didn’t work with physical persons directly. They told me that last year the hospital did a surgery for a 1 year-old child from Russia (as such operations can be hold only for babies from 1 year) having surged the baby to implant the diaphragm nerves stimulator. The support program, which is very expensive, was financed by the Russian Ministry for Health and Social Development.
At the Tushinskaya hospital Marusya was examined by Yuri Misernitsky, the Chief Child Pulmonologist of the Ministry of Health and Social development. He confirmed that Marusya could have surgery in the future, and until then she could stay at home provided we get a prominent artificial lung ventilation equipment. Obtaining this equipment is one of the necessary requirements for the future surgery. Also we’ll need to purchase the pulsoximeter, pumping aspirator, oxygen concentrator. Besides we’ll have to organize Marusen’ka’s delivery to the hospital, her rehabilitation etc. Her decease is very complicated, but the chance that Marusen’ka can live normal life is VERY HIGH.
Please help us collect funds to buy the artificial lung ventilation equipment, find a clinic (perhaps, there’re more clinics that can do these kind of surgeries) and obtain necessary funds. I understand that an intermediary will take a certain percentage fee for his/her services and that it can be much cheaper if we communicate with the clinic directly. We will be very grateful for any kind of help, not only financial. Perhaps, any of you has connections in Germany or any other country where such operations can be performed and these people can help to establish communication with such a clinic. Alternatevely, maybe one of you speaks German, English or any other European language and can help us to communicate with the Clinic and make necessary translations; as medical documents translations services are very expensive. When we translated the medical documents for Marusya, we paid 8,000 (eight thousand roubles – about $290), and then we found-out the translation rates in Germany would be much cheaper – about 90 euro per hour. The "Client escort” which is necessary for a foreign patient as well as transportation services are also very expensive. Perhaps there’re people among you that can put the information in the mass-media and internet or have experience in getting subsidy from the Ministry of Health. Marusya needs help from all the kind-hearted and not indifferent people. We need help from the State, Charity funds, organizations, persons, because the amount we have to get is really very large.
Marusen’ka is a very active girl despite of the fact that she has to lie down all the time. She likes to "point out” with her small hands, takes-off her blanket with her legs, turns to her side. She holds her rattle very well, plays with toys placed at her bed, tries to make sounds even despite of the traechostoma. When she was 4 months old, Marusya started to turn to her side, and at her 5 months she tried to sit-down and tear away her breath pipe as she doesn’t think she needs it. The doctors say that in many aspects Marusya doesn’t differ from healthy children. Inspite of her sickness Marusen’ka is an active and strong baby with the fighter’s character. She wants to live very much. Help us, please!
Thanks a lot in advance for your understanding, support and help.
With my kindest regards,
Julia Bogatskaya
