Help Miran Duman SMA Type 1

 Hello,
I'm Miran Duman. One month after I was born, my family noticed that my movements had decreased and had a genetic test. We waited for my result to come out and I was diagnosed with Spinal Muscular Atrophy Type 1. SMA disease is a disease caused by the absence of SMN-1 and SMN-2 genes that enable muscles to move in the human body. Due to this severe illness I had with my young age, my movements in my arms and legs decreased almost to no avail, and due to respiratory distress, I was now connected to a mechanical ventilator.
After my illness, which was a devastating illness for my family, I was now having difficulty breathing, adding to their sadness. My family has great hope that I need to reach the ZOLGENSMA drug so that I can live and breathe comfortably regardless of the device. My treatment in America will take 3 months and we will be staying at San Antonio, TX at this time. My parents and older sister will support and assist me in this process. We need your support with lodging, transportation and related expenses. With your support, you can make me reach my dream of life.

Merhaba,

Ben Miran Duman . Ben doğduktan 1 ay sonra ailem hareketlerimin azaldığını farkederek genetik test yaptırdı. Sonucumun çıkmasını bekledik ve bana SpinalMuskular Atrophy Tip 1 tanısı kondu. SMA hastalığı insan vücudunda kasların hareket etmesini sağlayan SMN-1 ve SMN-2 geninin olmamasından kaynaklanan bir hastalıktır. Küçük yaşımla taşıdığım bu ağır hastalığım sebebiyle kollarım ve bacaklarımda hareketlerim yok denecek kadar azaldı ve solunum sıkıntısı sebebiyle artık mekanik ventilatöre bağlandım. Ailem için büyük bir yıkım olan hastalığım sonrası artık nefes almakta da zorluk çekiyor olmam üzüntülerine üzüntü ekledi. Ailemin büyük bir umudu var benimde yaşayabilmem , cihaza bağlı olmadan rahatça nefes alabilmem için ZOLGENSMA ilacına ulaşmam gerekiyor. Amerika'da olan tedavim 3 ay sürecek ve bu sure zarfinda San Antonio, TX da ikamet etmek zorunda kalacagiz. Bu süreçte annem, abim ve ablam bana destek ve yardımcı olacaklar. Ama San Antonio sehrinde kaldigimiz sure icerisinde ulasim, konaklama gibi ihtiyaclarimiza destek olabilirseniz cok sevinirim.

 

Hello,

I'm Miran Duman. One month after I was born, my family noticed that my movements had decreased and had a genetic test. We waited for my result to come out and I was diagnosed with Spinal Muscular Atrophy Type 1. SMA disease is a disease caused by the absence of SMN-1 and SMN-2 genes that enable muscles to move in the human body. Due to this severe illness I had with my young age, my movements in my arms and legs decreased almost to no avail, and due to respiratory distress, I was now connected to a mechanical ventilator.

After my illness, which was a devastating illness for my family, I was now having difficulty breathing, adding to their sadness. My family has great hope that I need to reach the ZOLGENSMA drug so that I can live and breathe comfortably regardless of the device. My treatment in America will take 3 months and we will be staying at San Antonio, TX at this time. My parents and older sister will support and assist me in this process. We need your support with lodging, transportation and related expenses. With your support, you can make me reach my dream of life.