Salieva Liana

My name is Svetlana Aleksandrovna Lvova. My long-expected daughter Liana Azamatovna Salieva was born on August 2, 2016. She was the second child in the family. We live in Kyundyae village of Suntarsky ulus, the Republic of Sakha (Yakutia).

 In March of 2019 Liana fell ill. She experienced frequent nosebleeds, sweating, vomiting, and periodically she was feverish. We were sent to the hospital of the ulus, and according to the results of tests she was diagnosed with pneumonia. Liana started wasting away very quickly. She stopped eating, playing, started acting up, her legs hurt and with each day it was becoming harder and harder for her to walk, her right eye started to swell.

 On April 17 we were admitted to the National center of medicine in Yakutsk city. After long examinations my daughter was diagnosed with a terrible disease, that our family could not believe to the last — neuroblastoma of the right adrenal gland, stage 4, with metastasis in lymph nodes, bone marrow, skin and skeletal bones, high risk group. The diagnosis sounded like a death sentence.

 In a short period of time Lianochka had to go through a lot: surgery to procure biopsy material to establish the correct diagnosis; 6 courses of intensive chemotherapy according to protocol NB-2004; tumor resection surgery that lasted many hours; high-dose chemotherapy; bone marrow transplantation and 21 day in the isolation ward that followed; radiation therapy with anesthesia. All that was done at the Federal State Budgetary Institution National Medical Research Center of Pediatric Hematology, Oncology and Immunology named after Dmitry Rogachev.

 In December of 2019 we came back to our home town. Liana receives supporting treatment, the last course of which ends on November 1, 2020. Then immune therapy is planned.

 The medical board of the Federal State Budgetary Institution National Medical Research Center of Pediatric Hematology, Oncology and Immunology named after Dmitry Rogachev allows the individual use of medication Quarziba (international non-proprietory name —  ), 15 vials for 5 courses, according to vital indications. This medication is the only possible way of supporting treatment due to the lack of alternative medications of this kind on the territory of the Russian Federation, but it is not registered in Russia. The cost of one vial is more than 14 000.00 euro, and it can only be purchased abroad. We are unable to gather such a sum on our own even if we ask all our friends and colleagues for help, despite the fact that everyone is being very supportive.

 Currently Liana feels much better even though she has such a serious progressive hereditary pathology. She eats well, she can walk but gets tired very fast. Despite the hard path we had to take, we do not succumb to despair and are ready to fight with the disease no matter what!

Every day I spend with my daughter gives me strength and hope that this horrible and deadly disease will leave my child’s body.  I want to braid her hair with white bows on her first day of school, I want her to get education, to see the world, to travel, to fall in love. I want to hear her saying “Mom, I’m getting married!”, “Mom, you’re going to become a grandmother soon!”. All our relatives and friends, especially me, her mother, want our Lianochka to continue her treatment. The most important dream is for her TO STAY ALIVE!

 I am a single mother who is raising two children, and I do not have enough strength to fight for the healthy life of my child alone. We greatly need your support!  We would like to thank you in advance, and we sincerely believe that goodness and mercy will prevail”. Do not stand aside. Thanks to our participation Liana will get a chance to stay alive and will defeat the disease!