Rett Syndrome: Martilee and I -- Maybe I can't and Maybe She Can
... Somewhere in the center of me is a boy who cannot look in the mirror if I think there is something I am really backing away from out of fear.
Because I could.
When I was a kid, I put in the miles because I could:
6th, 7th & 8th grade: ran/walked a 14-mile once a year; during high school, on two occasions, I ran a 10-mile distance twice; at 23, I did 35 miles once (albeit with breakfast and lunch rest breaks).
Maybe I can't.
As I get older, I find myself doing things because maybe I can't. I see a challenge (GoRuck Challenge, in this case), and I am a little afraid of it, so I have to do it. Somewhere in the center of me is a boy who cannot look in the mirror if I think there is something I am really backing away from out of fear. Maybe that's an odd motivation ... maybe it's pretty common. That's where I am/who I am.
So, this is what has me running around town lately with a weighted ruck on my back.
Maybe She Can.
Here is the point: I am trying to get your attention. I dream (and others, I can only imagine, dream harder than I) of a day when my niece walks, runs, laughs with me, tells me "hello ... there you are, Uncle Dan." How amazing one day when she uses her voice to tell her mother and father, "I love you ... I've wanted so long to say it."
These are exciting times for Rett Syndrome research, and brilliant breakthroughs have come in the last 18 months. Learn more about Rett Syndrome and the research here. Excerpts from the site follow:
"Rett syndrome is a unique developmental disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys.
Rett syndrome has been most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay
Rett syndrome is caused by mutations on the X chromosome on a gene called MECP2. There are more than 200 different mutations found on the MECP2 gene. Most of these mutations are found in eight different “hot spots.”
Rett syndrome strikes all racial and ethnic groups, and occurs worldwide in 1 of every 10,000 to 23,000 female births.
Rett syndrome is a developmental disorder. It is not a degenerative disorder.
Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.
Rett syndrome symptoms appear after an early period of apparently normal or near normal development until six to eighteen months of life, when there is a slowing down or stagnation of skills. A period of regression then follows when she loses communication skills and purposeful use of her hands. Soon, stereotyped hand movements such as handwashing, gait disturbances, and slowing of the normal rate of head growth become apparent. Other problems may include seizures and disorganized breathing patterns while she is awake. In the early years, there may be a period of isolation or withdrawal when she is irritable and cries inconsolably. Over time, motor problems may increase, but in general, irritability lessens and eye contact and communication improve."
Now I've mentioned it before, you have $25. Some of you have donated already through me ... others have given before. If you have not, please take just $25 that you would have spent on McDonalds, on a couple of delivered pizzas, on breakfast with a couple of $5 mochas, on whatever way we all so easily throw aside $25 in our day to day lives ... reserve $25 just one time and donate it below so Martilee -- my beautiful, sweet niece -- can some day run to my brother and tell her daddy "I missed you."
Pass on a pizza, help little Rett girls across the globe. Please share with other facebook friends.
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