Monday, July 30, 2012


3-1/2 years ago Sydney started having seizures which turned into a constant twitch that started in her face and quickly spread over her entire body. After several hospital stays and trips to various institutions they have not been able to come up with a diagnosis or treatment. Sydney is 6-1/2 years old now.  We are not giving up hope.

Seizures, twitching in face, arms, hands, and feet, delayed development.

Every test under the sun!  Went to NIH Undiagnosed Diseases Program.  Numerous tests came back negative and only test left is a complete gene sequence, which we are still waiting on the results.

Ketogenic diet, several seizure medications, chiropractor, PT, OT, speech therapy, horse therapy

Recently, we found another little girl with the same symptoms through an article on CNN and the NYT. We are hoping that if we find enough children with the same symptoms it will point to a clue as to what is causing this and hopefully a successful treatment. We know there are others like her out there.

Contributed by MOM Carrie Marko to see more about Sydney here is a YouTube video her mom shared.

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