"Affection Butterfly" Entering To Our Life

I will tell you today the turning point of my life and the purpose of my life. In the summer of 2008 I received news of my sister's birth. I went running home, and what I see when I enter the house is an angel. As soon as I saw it, there was a tight bond between us. My whole life changed after that day.

My relatives and my parents told me that ; my sister looked different, but I did not notice for a long time. Just I see is my sister's pretty glasses. But then I realized that she had a hallermann-streiff syndrome.His hair didn't grow, his body did not improve, but his tiny body had a heart as big as the world.

Hallermann-Streiff syndrome: a rare congenital condition characterized by abnormalities of the skull and bones of the face; characteristic facial features; sparse hair; degenerative skin changes; eye abnormalities; dental defects, and proportionate short stature. Some affected people have intellectual disability. The condition has also been referred to as HSS or Hallermann Streiff Francois syndrome. The abnormal facial features can include a short, broad head (brachycephaly), a prominent forehead and/or sides of the skull (frontal bossing); a small lower jaw (micrognathia); a narrow, highly arched palate; and a thin, pinched, tapering nose (beaked nose). The genetic cause of Hallermann-Streiff syndrome is not understood and most cases occur randomly for unknown reasons (sporadically).

As my sister and I grew up I realized that the situation was different than I thought it would be. As she grew his body gave different reactions.  The nights were experiencing great breathing problems and he could not breathe easily . As a result, tracheostomy treatment was performed . He could breathe well now.

Tracheostomy (tray-key-OS-tuh-me) is a surgically created hole through the front of your neck and into your windpipe (trachea). The term for the surgical procedure is the opening of the tracheotomy.A tracheostomy provides an air passage to help you breathe when the usual route for breathing is somehow obstructed or impaired. A tracheostomy is often needed when health problems require long-term use of a machine (ventilator) to help you breathe. In rare cases, an emergency tracheotomy is performed when your airway is suddenly blocked, such as after a traumatic injury to your face or neck.When a tracheostomy is done, it's allowed to heal or is surgically closed. For some people, a tracheostomy is permanent.

When I first saw him sleeping comfortably, I breathed a sigh of relief . I must say that even while he was living these moments he was giving joy and happiness to my family.She was the biggest gift that came to us. Thank Allah for that. I Love His So Much. 

My purpose in telling this story is doctors say my sister can't live. But we don't lose hope and she lives on. 

Don't lose your hope !!