On August 20, 2012 my friend Karly passed away. She spent her whole life battling Rett syndrome, a disorder of the nervous system that affected her body and speech. Also, because of the neurological aspect of it she had seizures and uncontrollable breath holding along with hyperventilation. Without the use of her voice and the control of her body, Karly struggled with communication up until the age of 10. That's when her family and therapist figured out a way for her to communicate using facilitated communication; with the help of someone supporting her arm she was able to use a keyboard to type out her words letter by letter. The person helping her could then translate what she was saying allowing her to express her feelings, wants and desires. She also wrote blog posts and amazing poetry along with creating music, all by facilitated communication.
I first learned about Karly on the radio, and through that went to her blog site. I left a comment sharing my story. She got back to me right away and after a bit we set up a time to meet at her house. My first impression was pure amazement; I was mesmerized by her intellect, kindness and accuracy as she typed out what she wanted to say throughout our entire conversation. I went home with a new perspective on communication and the different abilities of people with disabilities. We got together many times after that, including meeting at the Science Museum. She introduced me to her therapy horse, Beau and I got to know her family really well.
Although I'm sad she's no longer here, I know she's in a better place. Karly's faith was stronger than anyone I've ever known and she was very much at peace. Her blog and words were read by thousands around the world and she helped many families dealing with Rhett syndrome. According to her mom, after her passing it received over 10,000 visitors. She taught me to live life to the fullest and to not let challenges stand in your way. She will never be forgotten and I'm proud to call her my friend.
Earlier this year Karly wrote a poem in which she instructed her mom to post on her blog after she passed away.
The music of heaven fills my heart with longings I cannot ignore
The time spent on earth full of its possibilities,
becomes a distant memory
compared to what I see through weary eyes
I leave my love behind to offer as a beacon
for those who wonder if it’s true,
I have seen, I have heard, I am certain
It’s a small step for me now on this path
I hear the tears of many who have loved me so well.
Love another like you loved me,
and this world will be a better place.
I see the face of God
I see my new beginning and I am full of joy
I will watch for you, please come.
February 17, 2012