Meet my daughter, Anna. Anna is 5 years old and has a CASK gene mutation. Anna faces many medical issues including learning delays, optic abnormalities, speech delays, Microcephaly, ASD, and the list goes on. Anna is a caring and strong little girl. There are very few like her in the world. 50-60 confirmed cases thus far. Anna is high functioning. Anna walks and talks but is involved in many therapies...about 8 hours a week. Unfortunately, this mutation does not affect children the same. Some girls do not walk or communicate. Anna is the only person diagnosed in Pennsylvania...also the only diagnosed child at Childrens Hopital of Pittsburgh. There is very minimal research out on CASK. We are fortunate to be involved with amazing people who dedicate their time to find answers.
When Anna was 6 months we were sent to the Children's Hospital of Pittsburgh Child Development Unit where we met Annas neurologist. We had no idea the impact she would have on us. She is the most dedicated doctor I have ever met in my life. She has followed Anna with care and understanding. She is honest and thorough. I often asked myself how I would or could ever thank her for what she's done for my daughter. When I was approached about the Pittsburgh Marathon...I knew what I needed to do. The money Team Renegades raises will go to Children's Hospital of Pittsburgh Neurology department. This is our 2nd year running and we couldn't be more excited. Help CHP make a difference.
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