Tag Archives: Baylor Hospital

The Road from Here to There- the next 28 steps

Well, we are counting down now, 28 days or less, 28 steps or less, ’til we turn another bend in a treatment for Rett syndrome; the FDA’s time to respond to Neuren’s application for Orphan Drug Status and Breakthrough Therapy … Continue reading

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A Year in Pictures

Today ends Rett Syndrome Awareness Month, and a year since Katie got accepted into the NNZ trial. During this month, we (parents) post a lot about what Rett syndrome takes away, how difficult it is, how much it seems to … Continue reading

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One year later….

One year ago today, I found out Katelin had been approved for the NNZ study. One whole year’s gone by in a blink. As I look back on this day through the advantage of Time, I was right to be … Continue reading

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Explorers in the World (of Rett Syndrome)

Today being Columbus Day in America (and please, let’s not get political here ; ) ) got me thinking about explorers. So many brave men and women who left their countries to find what was beyond the known. Can you … Continue reading

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Symptoms of Rett Syndrome, Katie style.

Here’s a list of SOME of the symptoms of Rett Syndrome, taken from the Mayo Clinic Website Slowed growth. Brain growth slows after birth. Smaller than normal head size is usually the first sign that a child has Rett syndrome. … Continue reading

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