30.09.2022
Number of Reads : 3904
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Turkey SMA Foundation Deputy Chairman Ece Soyer Demir; A few months after his birth, his son, Çağan Meriç, who was diagnosed with Spinal Muscular Atrophy (SMA) disease, and his difficult struggle with his wife and family, the book SMA is a Hope, Alive Human, took its place on the shelves. In her book, Ece Soyer Demir describes her struggle with SMA and also tells the journey of the Turkish SMA Foundation, which was established in this process and has become a strong solidarity network today.

The book, whose entire income will be transferred to the fight against SMA disease; While guiding families, it also sheds light on the known misconceptions and the importance of early diagnosis in SMA, which is a preventable disease, with enlightening and accurate information on the subject.

By purchasing the book SMA is a Hope, from all bookstores and digital channels, you can contribute to supporting more sick individuals and their families in the fight against SMA.

From the book:
When I said, "A little motionless," the doctor first looked at her face, then at her reflexes, then at my face. Anxiously, sadly...
"Is he always this cheerful, does he look alive?"
"Yes."
“Does it push your tongue out?”
"Yes sometimes."
“Do her legs look like a breaststroke?”
"Yes."
“Does his stomach go down like this while he breathes?”
"Yes."
Every "yes" I said stuck inside me.
“There is a disease that I suspect, but genetic testing is required for a definitive diagnosis. But I can tell you, you have a very serious problem.”
"Well, what's the name of that disease?"
“SMA. I hope he isn't."
SMA... I wanted to delete those three letters from the alphabet, to remove them from all words. What kind of pain is this that I'm feeling? This pain is indescribable...

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