Yigit'in Umudu Ol! - Hope for Yigit!
Donation protected
Turkce Aciklamasi Asagidadir.
Hope for Yigit!
I am starting this campaign for the first child of my cousin Meltem and her husband Bahadir Akkaya.
Yigit was born April, 2019 in Iskenderun, Turkey. He is the first child of Meltem and Bahadir, who chose the name Yigit, because it refers to a person of exceptional bravery and strength. They were like all first-time parents, enjoying their new baby and anticipating all the things that he will learn as he develops. At 5 months old, they felt something was not right with his health and took him to the local hospital. He was transferred to Adana for further tests and was diagnosed with SMA Type 1.
SMA – Spinal Muscular Atrophy is a genetic disease caused by an inadequate production of the protein - Survival Motor Neuron. This protein is essential to the motor neurons in the spinal cord, which control muscular function. Yigit suffers from SMA Type 1, also known as Werdnig-Hoffman Disease, which is typically evident at birth or shortly thereafter, where the baby has almost no control of their limbs and core muscles. In addition to their lack of bodily control, infants have a difficult time eating and swallowing, which leads to aspiration and frequent respiratory infections. Since they have trouble holding up their heads and are unable to control most of their body, they are typically left bed-ridden and unable to sit unassisted, and require constant Physical Therapy. As the disease progresses and the muscles start to diminish, breathing becomes extremely labored creating the need for a CPAP (Continuous Positive Airway Pressure) machine for everyday breathing. Typically, without gene therapy treatment, life expectancy beyond 2 years is unlikely.
There is only one approved gene therapy currently available for SMA Type 1, called Zolgensma. The cost of the treatment (including hospitalization) in the United States is about $2,400,000. This treatment is not yet available in Turkey, so Yigit will need to go to the United States to receive this therapy before he reaches 2 years of age, as that is the cut off age for treatment.
We need a lot of help in a very short amount of time to save Yigit. Please help us save young Yigit by making a donation - anything that you can give will help to give him a chance at a normal life and will be greatly appreciated.
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Yigit' in umudu ol!
Merhaba,
Bu bagis kampanyasini kuzenim Meltem ve Bahadir AKKAYA'nin 17 aylik evladi Yigit AKKAYA icin baslatiyorum.
Yigit, nadir olarak gorulen bir genetik hastalik olan Spinal Muskuler Atrofi (SMA) Tip 1 hastasi. Yigit'in saglikli bir yasantisi olabilmesi icin, Amerikan Gida ve Ilac Dairesi (FDA) tarafindan onayli Zolgensma adinda gen tedavisini bir an once olmasi gerekiyor. Yigit'in tedavi sureci Amerika'da olacak ve toplam maliyeti (yan tedavi masraflari ile birlikte) 2.4 Milyon Dolar tutuyor. Bizlerin bu tedavi miktarini toparlamamiz icin sizlerin de maddi ve manevi desteginize ihtiyacimiz var.
Yigit, Meltem ve Bahadir AKKAYA'nin ilk cocuklari olarak 2019 yili nisan ayinda dunyaya geldi. Henuz 5 aylikken ailesi Yigit'in hareketlerinde anormal bir durum oldugunu farketti ve Adana’da bulunan Seyhan hastanesine basvurdular. Hastane Yigit'in Adana Balcali Hastanesine naklini istedi ve oradaki tahliller sonucu Yigit'in SMA Tip 1 hastasi oldugunu ogrendiler.
SMA; nefes alma, hareket etme,yemek yeme gibi motor hareketleri saglayan kaslarin zayiflamasina ve ileri ki surecte tamamen durmasina sebep olan bir hastalik.
Yigit'imiz su an yuruyemiyor,konusamiyor ve desteksiz oturamiyor. Bu hastalik hizli ilerledigi icin Yigit'in en kisa surede gen tedavisi olmasi gerekmektedir. Avexis firmasi tarafindan uretilen Zolgensma gen tedavisi 2 yas alti bebekler icin uygulanmakta olup, tek dozluk damardan uygulama yontemiyle hastaligi kalici olarak tedavi edebilmektedir. Bu sayede saglikli bir bebegin sahip oldugu motor hareketlerine Yigit'imizin de kavusmasi mumkun olacaktir.
Yigit'in sagligina kavusmasi icin sizlerin de Yigit'imize destek olmanizi, bizlere bu zor ve kisitli surecte yardim etmenizi diliyoruz.
Sevgilerimizle,
Meltem-Bahadir AKKAYA
Hope for Yigit!
I am starting this campaign for the first child of my cousin Meltem and her husband Bahadir Akkaya.
Yigit was born April, 2019 in Iskenderun, Turkey. He is the first child of Meltem and Bahadir, who chose the name Yigit, because it refers to a person of exceptional bravery and strength. They were like all first-time parents, enjoying their new baby and anticipating all the things that he will learn as he develops. At 5 months old, they felt something was not right with his health and took him to the local hospital. He was transferred to Adana for further tests and was diagnosed with SMA Type 1.
SMA – Spinal Muscular Atrophy is a genetic disease caused by an inadequate production of the protein - Survival Motor Neuron. This protein is essential to the motor neurons in the spinal cord, which control muscular function. Yigit suffers from SMA Type 1, also known as Werdnig-Hoffman Disease, which is typically evident at birth or shortly thereafter, where the baby has almost no control of their limbs and core muscles. In addition to their lack of bodily control, infants have a difficult time eating and swallowing, which leads to aspiration and frequent respiratory infections. Since they have trouble holding up their heads and are unable to control most of their body, they are typically left bed-ridden and unable to sit unassisted, and require constant Physical Therapy. As the disease progresses and the muscles start to diminish, breathing becomes extremely labored creating the need for a CPAP (Continuous Positive Airway Pressure) machine for everyday breathing. Typically, without gene therapy treatment, life expectancy beyond 2 years is unlikely.
There is only one approved gene therapy currently available for SMA Type 1, called Zolgensma. The cost of the treatment (including hospitalization) in the United States is about $2,400,000. This treatment is not yet available in Turkey, so Yigit will need to go to the United States to receive this therapy before he reaches 2 years of age, as that is the cut off age for treatment.
We need a lot of help in a very short amount of time to save Yigit. Please help us save young Yigit by making a donation - anything that you can give will help to give him a chance at a normal life and will be greatly appreciated.
______________________________________________________________________________________________________________________________________________
____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
Yigit' in umudu ol!
Merhaba,
Bu bagis kampanyasini kuzenim Meltem ve Bahadir AKKAYA'nin 17 aylik evladi Yigit AKKAYA icin baslatiyorum.
Yigit, nadir olarak gorulen bir genetik hastalik olan Spinal Muskuler Atrofi (SMA) Tip 1 hastasi. Yigit'in saglikli bir yasantisi olabilmesi icin, Amerikan Gida ve Ilac Dairesi (FDA) tarafindan onayli Zolgensma adinda gen tedavisini bir an once olmasi gerekiyor. Yigit'in tedavi sureci Amerika'da olacak ve toplam maliyeti (yan tedavi masraflari ile birlikte) 2.4 Milyon Dolar tutuyor. Bizlerin bu tedavi miktarini toparlamamiz icin sizlerin de maddi ve manevi desteginize ihtiyacimiz var.
Yigit, Meltem ve Bahadir AKKAYA'nin ilk cocuklari olarak 2019 yili nisan ayinda dunyaya geldi. Henuz 5 aylikken ailesi Yigit'in hareketlerinde anormal bir durum oldugunu farketti ve Adana’da bulunan Seyhan hastanesine basvurdular. Hastane Yigit'in Adana Balcali Hastanesine naklini istedi ve oradaki tahliller sonucu Yigit'in SMA Tip 1 hastasi oldugunu ogrendiler.
SMA; nefes alma, hareket etme,yemek yeme gibi motor hareketleri saglayan kaslarin zayiflamasina ve ileri ki surecte tamamen durmasina sebep olan bir hastalik.
Yigit'imiz su an yuruyemiyor,konusamiyor ve desteksiz oturamiyor. Bu hastalik hizli ilerledigi icin Yigit'in en kisa surede gen tedavisi olmasi gerekmektedir. Avexis firmasi tarafindan uretilen Zolgensma gen tedavisi 2 yas alti bebekler icin uygulanmakta olup, tek dozluk damardan uygulama yontemiyle hastaligi kalici olarak tedavi edebilmektedir. Bu sayede saglikli bir bebegin sahip oldugu motor hareketlerine Yigit'imizin de kavusmasi mumkun olacaktir.
Yigit'in sagligina kavusmasi icin sizlerin de Yigit'imize destek olmanizi, bizlere bu zor ve kisitli surecte yardim etmenizi diliyoruz.
Sevgilerimizle,
Meltem-Bahadir AKKAYA
Organizer
Cem Aritanar
Organizer
Monroeville, PA