Sunday, December 8, 2019

Low expectations are the key

As I  mentioned [here], November was Epilepsy Awareness Month.

But nothing can be as stark a reminder of the tragedy of epilepsy as a death that results from it. Because while most people are aware that epilepsy is a debilitating ailment, and that the treatments available have many serious side effects, few view it as lethal. Even those of us whose loved ones suffer from it.

So the horrific death this week of a beautiful, vibrant Jerusalem teenager after an epileptic fit landed her under the light rail ["Jerusalem light rail strikes, kills 19-year-old woman"] warrants publicizing.

Haya, of course, is not in any danger of dying from her epilepsy in a similar manner. She never even stands independently. But SUDEP is a constant threat.

In the meantime, we struggle to reap the most minor achievements from her through therapies.

Occasionally, thanks to our rock bottom expectations, we find cause for celebration. Here she is in the video clip above impressing us all during her Occupational Therapy session this past week.

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