Blue Sky Girls: Moving on and up with Rett syndrome

Normally Mackenzie doesn’t climb stairs. But last month she ascended a few flights inside the Capitol building with the assistance of local firefighters. They carried her wheelchair and assisted other girls in the climb to recognize the challenges and hopes of those with Rett syndrome.

While the girls and their families cope with the syndrome every day, Oct. 13 marked Madison’s first observation of the international “Blue Sky Girls” annual event that raises public awareness of Rett syndrome. About 40 people and seven families with girls living with the syndrome attended this event.

Participants with Rett syndrome climbed up the steps inside the Capitol building to show that “no matter how difficult it is for them to walk with [the] physical difficulty they have, they move upward and forward,” said Kelly Schoeller, the event coordinator and mother of Mackenzie Schoeller, a nine-year-old girl living with Rett syndrome.

“Blue Sky Girls” has become a worldwide event since last year. This year, according to event organizers in Madison, about 24 states and seven countries celebrated the event simultaneously.

Governor Scott Walker signed a Rett Syndrome Awareness Month Proclamation for October. And Madison firefighters from the local 311 union came to the event to assist the girls with their symbolic climb to the top.

Rett syndrome was first identified in 45 years ago and is a progressive neurodevelopmental disorder that is caused by mutations in the X chromosome, which is why the syndrome occurs in girls. Rett Syndrome affects one out of every 10,000 to 23,000 female births worldwide, including all racial and ethnic groups.

Most families of girls affected by the syndrome believe the girls do not lose their ability to understand. The “Blue Sky Girls” event serves to remind people to “not equate the inability to speak with the inability to understand,” said Schoeller, “especially with the new study coming out that their cognitive abilities are better than what they thought.”

“They haven’t been able to test the cognition in children who cannot speak and cannot point, so I think they underestimated it,” said Schoeller. “Clearly, these girls are communicating, and clearly they have something to say.”