Help Children, Help Yourself

I am Oguzhan. I am reaching out to you because I have two big problems waiting for a solution in my hands. We have two little children waiting for help from their big sisters and brothers. One of the names is Nurmadina Jardyembyek, she is 5 years old and she is fighting diseases she has from her born. She lives in Mongolia as a Kazakhstani family’s child. She has been diagnosed with Treacher Collins Syndrome, which can be seen with a 0.00002 chance (1/50,000 people). So, it is a sporadic disease. It has many physical side effects which are problems with the skull, eyelids, ear/mouth/jaw frame, and respiratory tract besides its emotional effects. Moreover, it can affect the patient’s physical development, such as hearing/vision loss, feeding difficulty, and severe esthetics issues. Thus, patients need to get proper treatment as soon as possible when they are diagnosed. The total amount for basic treatments is 7,000 Euro (The first operation is 3,000, and the second one is 4,000 Euro) according to a report which was taken by her family from a Turkish Doctor who has visited Mongolia recently. They need to live in Turkey for almost 2 years. The total amount of expenses for her with the other costs related to hospital accommodation, tests, and after-treatment expenses is 50,000 USD according to Doctor’s estimation.

On the other hand, Nurdana Kalyemsharib, who is 4 years old, is fighting a similar disease but has more severe effects on her. She also struggles with heart and mental diseases with her main illness. She lives in Mongolia as a Kazakhstani family’s child. Unfortunately, her family did not get a report for her from the same Turkish Doctor but they have a report from a Russian institute with an English description of her disease. Besides, her fundamental physical and mental diseases, she has Hypoxic-ischemic encephalopathy (HIE) which damages the brain by a lack of oxygen in the blood for new borne. Moreover, she has ICP (increased intracranial pressure), which causes sudden increment pressure in the patient’s brain and severe pain for her. When a patient gets in this situation, she needs to get immediate medical treatment to reduce her pain. According to her doctors in Mongolia, she will also need around 30,000 USD for her treatment and other expenses related to her processes such as accommodation, tests, and after-treatment costs. Her father already put his car on the market to sell.

Therefore, our little children need approximately $80,000+5,000(gofundme&payment fees) for their future, for living more with us. They need help from their big brothers/sisters to keep up fighting these diseases. If we reach 800 people, the average expense amount per person will be $100. If we reach more people this amount will reduce as well. So, without any hesitation about your help amount even if it is $1 or $1000, you can save 2 children’s lives, and help humanity to prove still we there is hope for them. You can find the photos of these beautiful children and their related medical reports below.

 

Nurmadina Jardyembyek 5 yasinda ve dogustan sahip oldugu hastaliklara ragmen hayatta kalmaya calisiyor. Kendisi Mogolistan’da yasayan Kazakistan asilli bir abimizin cocugu. 2022 yilinda kendisine 50,000 de 1 karsilasilan tipik Treacher Collins Syndrome teshisi konuldu. Bu hastalık sonucunda hastaların kafa kemiklerinde, göz kapaklarında, kulak yapılarında, ağız ve çene yapılarında, solunum yollarında sorunlar oluşabilir. Hastalığın bu belirtilerinin dışında hastalarda gelişimsel sıkıntılar da oluşabilmektedir. Tedavilerin uygulanmaması sonucunda ise hastanın gelişimi sekteye uğrayabilir; beslenme, solunum, işitme, görme ve estetik sorunları yaşayabilir. Bu nedenle hastalara uygun zamanda uygun tedaviler uygulanmalıdır. Nurmadina’nin sukurler olsun ki herhangi bir zihni rahatsizligi bulunmamaktadir. Ekteki fotografta Nurmadina icin yapilan teshis tani ve tedavi raporu bulunmaktadir. Turkiye’deki ozel bir hastahane doktorundan alinan rapora gore sadece temel tedavi hizmetleri icin gereken ucret toplam 7,000 Euro (Birinci Ameliyat 3,000, ikincisi ise 4,000) olarak belirlenmis. Ameliyat esnasindaki ve sonraki surecte hasta yatis, testler, yasam ve yol masraflari vb gibi masraflar ise eklenmemistir. Nurmadina’nin 2 yila yakin Turkiye’de ikameti istenmektedir. Beraberinde bunlar sadece ilk gozlem teshis oldugu icin rapor sonunda da belirtildigi uzere gerekenden daha cok tetkik ve ek olarak gerekirse de tedaviler sunulacaktir. Bu yuzden gereken toplam masraf yaklasik 50,000 USD olacagi doktor tarafindan ifade edildi.

 

Nurdana Kalyemsharib de ayni sekilde 4 yasinda benzer bir hastalikla savasmakta, ayrica kalp ve zihni rahatsizliklarla da ugrasmakta. Kendisi yine Mogolistan’da yasayan Kazakistan asilli bir abimizin cocugu. Ailesi maalesef Turk bir doktora gosterip rapor alamamis ancak Rusca olarak yazilmis hastahane raporunda, sahip oldugu hastaliklar belirtilmis. Temel olarak sahip oldugu estetik/fiziki rahatsizliklari disinda kandaki eksik oksijen kaynakli yeni dogan beyin hasari seklinde yorumlanan Hypoxic-ischemic encephalopathy (HIE) hastaligina sahip. Sahip oldugu bir diger rahatsizlik ise ICP (increased intracranial pressure). Bu hastalik kisinin kafatasinda ani sekilde basincin artmasina ve yuksek agriya sebep olmaktadir. Bu durum medikal acil tedavi gerektirmektedir. Sonuc olarak Nurdana’ nin beklenen tedavisi icin de yaklasik 30,000 USD tahmin edilmektedir(Yasam, tedavi, yol ,masraflari ile birlikte).

 

Bu iki kardesimiz icin toplanmasi gereken yaklasik tutar $80,000+5,000(gofundme&banka kesintileri). Ortalama 800 kisi ile kisi basi $100 civari bir tutarla bu sayinin toplanmasi oldukca mumkun. Sizden cocuklarimiz icin elinizden geldigince yardimci olmanizi bekliyoruz.