Help us create a sanctuary for Karly:
Spirit Dances Garden
Many
of you know or have heard about Karly Wahlin. She is an amazing young
woman who writes poetry, paints, composes music, writes her own blog,
does public speaking and just by her very nature inspires a sense of
community. Karly accomplishes all this despite the fact that she lives
with Rett Syndrome.
For those of you who don’t know, Rett Syndrome is the combination of
five disorders. Epilepsy, acute anxiety, cerebral palsey, parkinson's
disease and autism all rolled into one body. While girls with Rett
Syndrome suffer through these physical ailments, their minds are working
just fine. Imagine how difficult to know what you want or need, but
not be able to voice it. Rett Syndrome has a profound impact on the
girls who develeop this disorder between the ages of a few months and 2
years. Karly is non-verbal and communicates using a computer keyboard.
She is unable to walk independently and has limited use of her hands.
The breathing center of her brain has been impacted by her disorder, so
that she oftens struggles to breathe, spending her days
hyperventilating, then breath holding. When she is really struggling,
she turns blue hundreds of times daily. In addition to all this, she is
legally blind.
With a true belief in her daughter’s ability to think and reason, Karly’s mom Lois, worked with Karly to help her figure out how to communicate. It finally happened when Karly was 10 years old! Prior to that time, she had no way to communicate even her most basic needs. They found that if Lois could steady Karly’s arm, Karly could type words…..and a whole new world opened up for both of them! She is now 26 years old and has accomplished more than anyone thought possible when she was young.
For more information on the amazing life of Karly, see her blog at
www.spiritdances.wordpress.com
Lately
Karly has not been feeling very well. Her seizures have been
especially difficult. She had been to hundreds of Drs, therapists and
experts in her life, spending much of her time in the past few years at
appointments, but there is little to be done to change the effects of
Rett Syndrome on her body. She has faced every difficult day in her
life with strength. Her faith is strong and she longs for peaceful
days, surrounded by flowers, music, water and family.
Facing
an overwhelming outpouring of concern from family and friends all
wanting to help, Karly and her family have come up with a way people can
help make her world a better place.
Here is an excerpt from an e-mail from Lois:
“Last
week, Karly was unable to communicate much. We were slowly walking in
the house one day and she stopped and indicated she wanted to type
something. She said: "I have a favor to ask. Will you help surround me
with flowers?" (She has always loved flowers. One of the first requests
she had when she started typing at 10 years old was to have a pot of
sunflowers planted on our deck to honor a friend who had died.) Friends
have been sending flowers and stopping by with flowering plants and our
home is very colorful! Many of our friends and family have offered to
help, offering whatever we need. We can only have so many wonderful
meals and flowers!! We love everything people have done, but something
that lives on, would be so appreciated by us now, and in the future.
So,
as I was pacing the floor last week, a thought occurred to me. The
plantings around our patio! How perfect it would be to have that area
finished, so Karly can enjoy the color and beauty for as long as she is
able. It will continue to live on and be a beautiful gathering spot. It
would be so much more meaningful if it was supported by everyone, near
or far, who wants to help our family. I shared this idea with one of our
neighbors last week, and Missy was on board! She embraced the idea and
with another mutual friend and her connections, is turning this vision
into something amazing.”
