Monthly Archives: October 2016

Halloween Awareness

I think it’s fitting, personally, that Halloween is the last day of Rett syndrome Awareness month. Some parents are rock stars… they come up with THE BEST costumes for their kids in wheelchairs, and for those with children that love going … Continue reading

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Speechless

In case you are slow to know, there’s a new show out there. One that speaks for US, the families of the speechless. It’s funny! Hey, we have incredibly funny lives at times. It has great lines like….”Other people’s opinions … Continue reading

Posted in Communication, Education, Special needs siblings, Speechless, Trail to a Texas Trial | Tagged , , , , , , , | Leave a comment

Awareness Through New Eyes

We are half-way through Rett syndrome Awareness month. So far, it’s sucked; not only for the Rett syndrome community, but I know for the FoxG1, as well. I also know when we speak of “Awareness” it’s usually in the context … Continue reading

Posted in cure, hope, Neuren Pharmaceuticals, Rett Syndrome, the sea, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , | Leave a comment

Getting a Glimpse of the Emerald City

I woke today from a nightmare, that Katie had died. That she didn’t make it to when Trofinetide was available. I watched as she slipped away, Fox laying on her chest, going up and down and then he stopped. This nightmare … Continue reading

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Vive la France!

Ok, Rett families, our French families need our help! They are in the running for an award of $20,000 Euros that would go toward a retreat for families in France. Last year, we all helped them win and they used … Continue reading

Posted in Association Francaise du Syndrome de Rett, French Rett Syndrome Association, Uncategorized | Tagged , , , , , , | Leave a comment

The Eyes Have It!

This gallery contains 19 photos.

Originally posted on Trail To A Texas Trial:
Ask any parent of a Rett child and they’ll tell you…”I can tell she understands, I can see it in her eyes.” Katie’s eyes are such a beautiful blue. They sparkle so.…

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My Heart is in Her Hands

                                                                This is an updated post from two years ago.   Fact: Abnormal hand movements. As the disease progresses, children with Rett syndrome typically develop their own particular hand patterns, which may include hand wringing, squeezing, clapping, tapping or rubbing.(Taken from … Continue reading

Posted in Communication, cure, Education, hope, NNZ-2566 trial, Rett Syndrome, Rett syndrome conference 2016, Trofinetide, Uncategorized | Tagged , , , , , , , , | Leave a comment

A One in a Million Boy

  Rett syndrome affects 1:10,000-15,000 females. You hear all kinds of statistics about girls; almost all literature has only the pronouns “she” and “her”.  Even doctors will talk in terms of only girls. Trials are only compiled of girls. But, … Continue reading

Posted in boys with Rett syndrome, Klinefelter's syndrome, Rett Syndrome, Rett syndrome conference 2016, Trail to a Texas Trial, Uncategorized | Tagged , , , , | 10 Comments

Death be not Proud…

“…One short sleep past, we wake eternally And death shall be no more; Death, thou shalt die.” John Donne   There is an advantage to social networking, it brings us together; it allows for a support system so wide and … Continue reading

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October Siblings

This post, from three years ago, really struck a chord in people. It was the highest viewed post ever. And, the most shared. Rett syndrome Awareness is not just about Rett syndrome, it’s about the families who love them. October Siblings … Continue reading

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