Archive for October, 2012

Remembering Karly’s Life

October 4th, in “Karly’s Spiritdances Garden”. This is the view from the chair Karly sat on in her garden the last few months of her life.

October is Rett Syndrome Awarenss month.  As Karly’s mom, I know how much she struggled throughout her life and ultimately died as a result of  the many complications that Rett Syndrome created in her body.  These are her some of her last written words:

“God is my best friend, and He has given me so much comfort to have endured disability and pain.  But it’s been hard, so I hope that there will be a cure for the young girls who are coming into this world affected by Rett.” 

Everyday of her life was full of enormous challenges. She did her best to live well in spite of them. My memory is full of the pain, isolation, stress, grief, loss and fear that Rett Syndrome caused.  Karly’s wish was that she could help other girls affected by this disorder by donating to Rett research.  Our family will be donating from the generous gifts we have received in Karly’s honor.  Please consider doing the same. Karly wrote her own bio for Girlpower2Cure.  Go here for making donations in our dear Karly’s honor.

One of the effects of Rett Syndrome is the loss of purposeful hand movements. That includes holding hands. The last few days of Karly’s life she was able to hold onto our hands. I treasure this photo of her arm entwined with mine.

Karly’s hands remained small and delicate her entire life, here at 27 years of age. Most girls with Rett Syndrome are able to do little with their hands because their hands are busy “fiddling” in Karly’s words, and often stuck at mid-line not allowing them to separate. Karly’s hands were separated each doing their own thing, so it allowed her to eventually find a way  to communicate with us. And she did that so beautifully! I miss hearing her typing.

With much gratitude,

Lois (Karly’s Mom)

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