Well...it's 2:22 am and I'm still thinking about the session I had with Karly this afternoon. She and her mother, Lois, her Stepfather Greg, and her good friend and caregiver Emily came to my studio to review and choose from the images we've created recently.

We've been working together recently because Karly has finished writing, composing, and now recording songs and poetry for her very first CD. What makes this so unusually amazing is that, as I mentioned in my last post, she lives with Rett syndrome.

To understand what that means, there is a link later to click on. I've also copied some info below to give just the basic descriptions of the syndrome.

Because of Karly's inability to keep eye contact or speak with her mouth, control many motor functions, and so-forth, her parents have described how many people don't seem to communicate with her in a meaningful way....speaking to her like she's a child instead of the amazing 24 year old woman she is.

Well I'm telling you that she is absolutely incredible!!! Her attention to detail and her appreciation for even the subtlest artistic nuances of the images she chose was awe-inspiring! Not only that, but her decisiveness as to where she would like to put any given image to use was a testament to her outstanding artistic gifts.

I've been truly inspired by the time I've been privileged to spend with Karly.

I'll be posting more info about her CD and where to purchase it as soon as I have that info. I've also attached one image, and there will be more to come.....

Jeff

Here is that link again: http://www.rettsyndrome.org/index.php?option=com_content&task=blogsectio...
And from the NINDS: http://www.ninds.nih.gov/disorders/rett/detail_rett.htm

Here is some info from the NINDS site:

Rett syndrome is a neurodevelopmenal disorder that affects girls almost exclusively. It is characterized by normal early growth and development followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems with walking, seizures, and intellectual disability.

The disorder was identified by Dr. Andreas Rett, an Austrian physician who first described it in a journal article in 1966. It was not until after a second article about the disorder, published in 1983 by Swedish researcher Dr. Bengt Hagberg, that the disorder was generally recognized.

The course of Rett syndrome, including the age of onset and the severity of symptoms, varies from child to child. Before the symptoms begin, however, the child generally appears to grow and develop normally, although there are often subtle abnormalities even in early infancy, such as loss of muscle tone (hypotonia), difficulty feeding, and jerkiness in limb movements. Then, gradually, mental and physical symptoms appear. As the syndrome progresses, the child loses purposeful use of her hands and the ability to speak. Other early symptoms may include problems crawling or walking and diminished eye contact. The loss of functional use of the hands is followed by compulsive hand movements such as wringing and washing. The onset of this period of regression is sometimes sudden.

Apraxia — the inability to perform motor functions — is perhaps the most severely disabling feature of Rett syndrome, interfering with every body movement, including eye gaze and speech.

Children with Rett syndrome often exhibit autistic-like behaviors in the early stages. Other symptoms may include walking on the toes, sleep problems, a wide-based gait, teeth grinding and difficulty chewing, slowed growth, seizures, cognitive disabilities, and breathing difficulties while awake such as hyperventilation, apnea (breath holding), and air swallowing.