My name is Bihter and I live in Turkey and I have twin sons.  One of my twins, Sarp, is affected with Canavan Disease, an inherited and always fatal degenerative brain disorder. Children with Canavan disease cannot crawl, walk, sit or talk. Over time they may suffer seizures, become paralyzed, blind and have trouble swallowing.

I had never touched a child with disabilities until the birth of Sarp. We lived in hell for an entire year, as it took eight long and grueling months for a diagnosis. Sarp has had countless bouts of pneumonia which we treated in the hospital.

My prince Sarp is almost 3 1/2 years old now and his courage and resistance to his rare disease has made me stand up every time when I myself have fallen down. He has taught me lots of things, even at his young age.  We do not know how much time we have left with precious Sarp and as a family we try to enjoy ever minute with him. I love him with every fiber of my being and I never ever stop believing in him.  I have come to know that I can understand every word that Sarp’s pair of eyes are telling.

I am proud to say that I have become knowledgeable in many medical procedures such as vein access, suctioning of secretions, and I have learned to live with the difficulties of having a disabled son. Especially in Turkey, I know how to get the most effective treatment for my son in ER, and have come to know what unconditional love means.

As a mother, I am trying to decide the best options for Sarp and trying to get the medical assistance he deserves. I don’t know if I can manage it, but I am delivering every kind of effort for him so he can get better. I made a promise to myself that I will always help my son to compensate for his disabilities.

I am his broken wings when my handsome man can not fly. I am legs. I am hands. I am the one who thinks about everything on his behalf. I promise we will be playing the most enjoying game with him in Heaven.

 

1 thought on “Living in Turkey With Young Son With Rare Condition Called Canavan Disease”

  1. Sarps Mom says:

    Thank you very much for your encourage, love all this angels….

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