rsrt.org

alexandraoranotherrett.blogspot.com

Alexandra or another Rett: Gloves and face rash

http://alexandraoranotherrett.blogspot.com/2012/01/gloves-and-face-rash.html

Please excuse all spelling and grammatical mistakes, my mom first language is French, but she loves to express herself in English. Wednesday, January 11, 2012. Gloves and face rash. Alexandra with both hands in the mouth, typical of her manifestations. I was hoping that it will change, but it still there. Sometime more then others time. The mittens allow her to be more present and open. She does not mind them , at the opposite it bring her centering and calmness. 2 Some food allergies? Rett Syndrome Rese...

spiritdances.wordpress.com

My Music | Inspired By Love

https://spiritdances.wordpress.com/my-music

This is my piano music. It is played by my friend and music therapist Karen Bohnert. My hands won’t allow me to play my songs, but the notes are all mine. It takes me about a year to complete each song. I have completed eight songs since I began composing in 2000. I will add a new song when I am able. My Dad helps me put my songs here. To hear some of my songs Click Here to Listen. Karen wrote this information so you would know how I compose my songs with her. Karly’s Composing Process. January 28, 2010.

spiritdances.wordpress.com

Remembering Karly’s Life | Inspired By Love

https://spiritdances.wordpress.com/2012/10/05/1746

Remembering Karly’s Life. October 5, 2012 · Filed under Uncategorized. 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:. I miss hearing her typing. With much gratitude,.

spiritdances.wordpress.com

The Invitation | Inspired By Love

https://spiritdances.wordpress.com/2012/08/20/the-invitation

August 20, 2012 · Filed under Companion Horse. Karly’s precious little hands. She was so determined to share her thoughts with us, then eventually the world after we found a way for her to communicate at age 10. As Karly’s health declined, she asked me to post this poem she wrote, after she passed. Her beautiful heart and spirit continued to guide us right to the end of her days. She leaves behind an enormous hole in our hearts and lives. Lois Swope-Karly’s Mom. Becomes a distant memory. February 17, 2012.

spiritdances.wordpress.com

Karly’s Memorial Service | Inspired By Love

https://spiritdances.wordpress.com/2012/09/17/karlys-memorial-service

Karly’s Memorial Service. September 17, 2012 · Filed under Uncategorized. Thank you to the hundreds who came from all over the country to join us in loving and remembering Karly. She brought so much light into the world and we feel her loss so deeply. She often told us over the past 12 years to remember, “the day I die will be the best day! I n a 2010 chapel talk Karly prepared for other adults living with physical disabilities, she said:. With great love, Lois (Karly’s Mom). 9 Responses so far ». Concer...

rettgirl.blogspot.com

Rett Girl Blog: Together with Evie

http://rettgirl.blogspot.com/2014/06/together-with-evie.html

Saturday, June 14, 2014. Welcome to our 3rd Annual Salute to Rett Dads! Each day this week leading up to Father's Day, we will share a blog written by a father of a girl suffering from Rett Syndrome. Later in the week we will share a video slideshow of over 100 dads with their beautiful girls. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" . times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

jacksonsmith.blogspot.com

Jackson August Smith: Pool Party at the Trine's

http://jacksonsmith.blogspot.com/2010/03/pool-party-at-trines.html

I am Jackson, I am six years old! I love kindergarten at Carlin Park where my mom teaches! It has been awhile since my mom has posted :( I hope you like keeping up with me and my mommy on this blog! Tuesday, March 30, 2010. Pool Party at the Trine's. Jordan, Ethan and Jackson hanging out poolside! That is a jellybean in Jackson's hand. Yep, that is Jordan on Josh's back and Jackson upside down in the air. Can you tell Jackson is having a good time today? Thank you Mr. and Mrs. Trine! My new cousin Boston.

rettgirl.blogspot.com

Rett Girl Blog: Being Avery's Dad

http://rettgirl.blogspot.com/2014/06/being-averys-dad.html

Friday, June 13, 2014. Welcome to our 3rd Annual Salute to Rett Dads! Each day this week leading up to Father's Day, we will share a blog written by a father of a girl suffering from Rett Syndrome. Later in the week we will share a video slideshow of over 100 dads with their beautiful girls. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" . times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

katefoundation.org

Kate Foundation for Rett Syndrome Research - Buy 2011 Ornaments

http://www.katefoundation.org/buy_2011_ornaments.html

Rett Syndrome Research Trust. 2015 Gala Tickets and Sponsorships. 2011 Ornament Collection - Limited Edition. The Kate Foundation for Rett Syndrome Research is proud to announce the release of our 2011 glass ornament set for Rett syndrome research fundraising. Hand-blown at the Glass Eye Studio. In downtown Seattle, each ornament contains volcanic ash from the 1980 eruption of Washington State's Mount St. Helens. How You Can Help. What does 'Limited Edition' mean? A Message from Glass Eye Studio. The Nor...