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Capitol event raises awareness for Rett Syndrome | Community Spirit

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Capitol event raises awareness for Rett Syndrome

 

A second annual event for families affected by Rett Syndrome will take place at the Capitol building Saturday.

The international Blue Sky Girls event will take place closest to State Street at 10 a.m.  Attendees are asked to wear purple, the Rett Syndrome awareness color, to show support.

City of Madison firefighters will attend the event and assist girls that need assistance climbing to the top.  Madison Fire Department Chief David will also participate.

Governor Scott Walker recently signed a proclamation declaring October to be Rett Syndrome Awareness Month.  Twenty-four states and seven countries will participate in similar ceremonies simultaneously.

Climbing stairs is a symbolic gesture, said a press release, because climbing takes you upward and forward.  The majority of girls and women with Rett Syndrome are unable to walk or climb stairs unassisted, the press release said.

"I believe stair climbing is even more symbolic for our girls than simply rising to the top when others may not expect them to be able to.  I think it is a reminder of what many people take for granted: just being able to walk up a flight of stairs," said co-coordinator Kelly Schoeller.

Rett Syndrome is a developmental disorder recognized in infancy and seen mostly in girls.  Symptoms include loss of speech and motor control, disordered breathing, severe digestive problems, scoliosis and fragile bones, anxiety and seizures among other symptoms.

Co-coordinator Heather Cooper said, "When you live in the rare disorder world, days like today remind you that you are not alone and that we still have a lot of educating to do to make the public more aware of our girls’ physical disabilities.  We have to teach the public about their cognitive abilities and their determination to overcome."

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