Jakyela Benson's story

2013-05-15 09:29:27 by tdomf_6569b, as posted on the inside.akronchildrens.org blog.

This story is about my daughter Jakyela. Jakyela was born in Youngstown, Ohio. The minute she was here, the doctors knew something was wrong. Her foot was backwards and her skin and eyes were different. They immediately started working on her and took her from me. It was a long day for me. Later that night, the doctor called me and said she was being transferred to Akron Children's Hospital and that my daughter had a rare genetic disorder called Conradi disorder (short for Chondrodysplasia punctata). While in Akron Children's she received a lot of testing in the NICU. Akron Children's is wonderful for the parents, they provided me with a room to stay close, and activities to keep my mind busy.

What my daughter has is very rare. It is some kind of dwarfism. The doctors are not even really sure how Jakyela will develop and what her future is. It is very confusing, and hard to deal with. If anyone out there has a child with this disorder or knows anything about it, please contact me at jesswahl19 AT gmail.com. My daughter is a godsend, and a beautiful baby, and I thank Akron Children's for the help.

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