Imagine, all of a sudden, you try to say something, but you can’t. Imagine, you try to reach and pick up something, but you are looking at your arm and hand, and they are not moving. Imagine, you get that feeling of having to go to the bathroom, but you can’t move, and 30 minutes later when you are sitting there not being able to move, your bladder gives out and you have
an accident. Imagine having an itch and not being able to scratch it. Imagine
the horror of needing help in some way, but you cannot call for help. You just cry.
This sounds like maybe you had a stroke. But, for a 1 year old girl, a stroke is very rare. What is even rarer is a monster to come and take away your mind’s ability to communicate with your body. That monster is called Rett Syndrome.
My daughter, Sarai, has this monster in her. The monster took her away from me, but I still see it in her eyes. Yes, Sarai is physically still with us, but Rett Syndrome, the monster, took away her ability to do. Do. A simple two letter word that describes the action of what your mind tells your body to fulfill or carry out. The Rett Syndrome monster is the king of don’t.
The Rett Syndrome monster has a couple of organizations that are devoted to a cure and to messing with it (kind of like messin’ with Sasquatch). One is the International Rett Syndrome Foundation (www.rettsyndrome.org)
and the other is the Rett Syndrome Research Trust (www.rsrt.org).
According to the International Rett Syndrome Foundation, the monster is caused by mutations on the X chromosome on a gene called MECP2. The monster doesn’t care about what country it is in, or what color your skin is.
The monster has stolen 1 of every 10,000 to 23,000 females in the world,
including my daughter. The monster 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. The ability of wanting to do, but can’t, is called apraxia, the most evil function of the monster.
Rett Syndrome, the monster, is currently the only autism spectrum disorder with a known genetic cause. You can see the monster in a blood test.
Researchers have actually put the monster in a mouse. The researchers were able to scare that monster out of that mouse! Research and studies are now going on with girls with Rett Syndrome. A cure may happen within Sarai’s lifetime! What is even more exciting is that the monster has some of the same attributes of other monster disorders, including Parkinson’s and Alzheimers and other autism spectrum disorders. The research is called a Rosetta Stone in research due to the fact that therapies and cures for the Rett Syndrome monster might just scare other monsters away.
October is Rett Syndrome Awareness Month around the world. Please visit the links above to learn more about Rett Syndrome.
On Saturday, September 29th, Sarai will meet with other girls that were taken by the monster up in Green Bay. They will look each other in their eyes and see the monster in each other. They will want to scare the monster in each other, but they will not be able to. As I said before, the girls cannot “do” what they want to do.
Please join us in scaring the monster in the girls with a
big shout and roar. You can do this by physically joining us at the first ever Wisconsin Strollathon for Rett Syndrome at Meadowbrook Park near Green Bay on September 29th with registration beginning at 9am. More
information on the strollathon can be found a www.firstgiving.com/rettsyndrome/green-bay-strollathon-2012.
You can also help Sarai roar at and scare the monster with a
donation in her honor at www.firstgiving.com/fundraiser/zolipethes/green-bay-strollathon-2012.
As Sarai was being taken away by the monster some 18 years ago, I, as her father, stood helpless. I just stood, and watched. I couldn’t fix the pain, the hurt, the agony she was going through. I never heard her say, “daddy, help me!”, because the monster made her mute. Sarai cried constantly, and all I could do was hold her. I couldn’t tell her it’s going to be all right, because that would have been a lie. As children sometimes annoyingly ask why about a lot of things, Sarai just had the cry and the “why” look on her face. I, as her father who should know answers to everything, did not have an answer for her. The monster is bigger than all of us.
One of the only things that have helped us manage the monster in Sarai is faith and trust in God and His grace and will. Other things have been family, friends, and the support of the International Rett Syndrome Foundation and the Rett Syndrome Research Trust.
Please be the voice that Sarai never had, and help us scare that monster in her.