Rett Syndrome

Stair-climbing may not be a groundbreaking experience to the average Joe, but if you saw Bella, Isold, or Sammi’s dress rehearsal last weekend, you would realize: it is.

They are three girls who live with Rett, a neurological genetic disorder that mainly affects girls. Children with Rett usually develop normally to between six and 18 months, before losing acquired speech and hand skills. More than half of the girls with Rett live in wheelchairs, have seizures, and rely on feeding tubes for their nutrition.

Bella, Isold, Sammi met to practice climbing 15 of the 30 steps of New York’s Tweed Courthouse, where they – and hundreds of other girls with Rett and their families – will be asked to climb the main staircase on Oct. 15th at 11 a.m. They will join their western counterparts – who will begin climbing at 8 a.m. PST, and their European teammates – who will start at 4 p.m., in a rise to the top at the same time.

“Climbing stairs is a symbolic gesture, because climbing takes you upward and forward, even if it is difficult,” Djukic added. “We are completely aware that many girls may not be able to climb stairs but they can try and then get help.”

The worldwide event includes the following venues: Harvard Medical Center, Cambridge, Mass., and the National Assembly Building, Belgrade, Republic of Serbia. Blue Sky Girls are also hosting events in Finland, Hungary, India, Ireland, Pakistan, Serbia, and from the U.S.: Alabama, Arizona, Florida, Missouri, New Jersey, Connecticut, Ohio and Pennsylvania.

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