SAVE AMALIYA A big interview with Amalia's parents, Radik and Venera, about how they found out about the diagnosis, what was done, and what are the further prognosis after receiving Zolgensma. Parents appeal to all those who are not indifferent to help in donating any amount. Filmed on March 12, 2023, by YES Media (https://instagram.com/yesmedia.uz?igs...) in collaboration with Dervish Production agency (https://instagram.com/dervish.product.... Filmed on March 12, 2023 by YES Media (https://instagram.com/yesmedia.uz?igs...) in collaboration with Dervish Production agency (https://instagram.com/dervish.product.... 00:00 start 00:09 dad about symptoms and diagnosis 04:18 dad about first reaction 04:58 dad about first actions and shocking price 06:58 dad about why property was not sold 07:59 dad about how long ago collection started, actions, who helps 09:25 Risdisplam drug - help from the State 09:50 ONA foundation helps 10:28 individuals help more 11:14 Dad about the collection period - by what time do you need to collect money 12:18 Dad about the experience of local doctors 12:45 the rehabilitation period after the injection 14:43 Dad about his prognosis 15:37 Radik's address to the people 15:53 ​​Mom about what SMA is 16:29 Mom about the first symptoms of the disease in Amalia 17:45 Mom about the test results 19:07 reaction to the result of the genetic test 20:00 Mom about the first steps 20:50 Mom about selling property 21:44 Mom about fundraising 22:55 about help from the State 23:15 about help from the ONA Foundation 23:44 why there is little time left before the collection closes 25:04 Mom about where the treatment and rehabilitation will be carried out 25:27 about the practice and experience of local doctors 25:50 when will the result be and what is the prognosis 26:25 prognosis from Mom 27:36 Mom on her youngest son’s concerns and his compassion for Amalia 30:24 Venus’s address to the people 30:44 Interview with her 6-year-old brother 31:33 Interview with Amalia’s older sister 32:28 Evelina’s address to the people *** Amalia Ibragimova was born on November 29, 2021 in Tashkent, Uzbekistan. At the age of 8 months she was diagnosed with Spinal Muscular Atrophy Type 1 (SMA-1). Being also called Werdnig-Hoffmann disease, it is a severe form of the disorder with muscle weakness evident at birth or within the first few months of life, which can lead to inability to even breathe. Amalia urgently needs to receive the Zolgensma Vaccine before she turns 2 years old in order to stay alive. Zolgensma is proven to stop the development of the disease and its price is now lowered to $2,125,000. It is not affordable for the family and also is not provided by the government. Please help Amalia! GoFundMe in Europe (Euros): 💫 https://gofund.me/eeed6ad9 GoFundMe in the USA (Dollars): 💫https://gofund.me/043eb7c4 VISA: 4023060236264478 Venera Ibragimova Other bank details for transfers from Uzbekistan, Kazakhstan and other countries: 🇺🇿 UZCARD: 8600490438960718 Venera Ibragimova 🇺🇿 UZCARD: 5440810005940001 Venera Ibragimova 🇺🇿 HUMO card: 9860270108841296 Venera Ibragimova 🇰🇿 KASPI GOLD (Kazakhstan): 4400430207183101 Venera Ibragimova 🇷🇺 SBERBANK (with a note: FOR AMALIA): 2202206148357200 Evelina Ibragimova (Aunt) Ways to contact: Email: [email protected] Facebook: / jiznamalii Instagram: / jizn_amalii. . Telegram of Mother Venera Ibragimova: @Ven_ibr Telegram of Father Radik Ibragimov: @a9999999000 #sma #save_amalia #amailiaibragimova #jiznamalii #zolgensma Crowdfunding funds collection: Telegram group: @jiznamalii Telegram channel: @jizn_amalii