Increasing Rett Syndrome awareness
By Sue Ellen Ross Post-Tribune correspondent October 22, 2012 3:34PM
U.S. Steel Firefighter Matt Adams (right) and Eric Jones help carry Neveah, 6, up the stairs during the "Blue Sky Girls" event at the old Lake County Courthouse in Crown Point, Ind., Saturday, Oct. 13, 2012. | Jim Karczewski~For Sun-Times Media
For more information on the Blue Sky Girls, call Mimi Burns at 776-5503.
Updated: November 24, 2012 6:05AM
When Mia Alvarez was born six years ago, she was diagnosed with autism. Tests continued and her mother, Melissa, was told by doctors that she should be prepared for a more serious diagnosis.
“But it was still a shock when we were told a few months ago that it was Rett Syndrome,” the Hammond mom said. “Especially since it’s such a rare strain that it doesn’t even have a name.”
Finding a support group locally has been comforting for the Alvarez family. They found one in The Blue Sky Girls, an international organization focused on helping girls with Rett Syndrome and their families. The Indiana chapter recently sponsored its first public event on the steps of the old Lake County Courthouse.
Mia and her Melissa were front and center with four other girls that have been diagnosed with the syndrome. The five youngsters were there to participate in a stair climb to commemorate Rett Syndrome Awareness Month this October.
Climbing stairs is a symbolic gesture, because climbing takes you upward and forward even when it is difficult, according to Mimi Burns, coordinator of the event and mother of 10-year-old Sophia, who has Rett Syndrome.
“The majority of girls and women with Rett Syndrome are, in fact, not able to walk or climb stairs unassisted,” she said. “I think it is a reminder of what many people take for granted — just being able to walk up a flight of stairs. When you live in the rare-disorder world, days like today remind you that you are not alone, but that we still have a lot of educating to do to make the public more aware of our girls.
“They are simply trapped in a body that refuses to work,” she added.
Events in 28 states and seven countries were held simultaneously Oct. 13.
Rett Syndrome is a developmental disorder first recognized in infancy and seen almost exclusively in girls. The affliction impairs the ability to walk, talk or feed oneself. Seizures are also common.
Nikole Dilts 21, of Anderson, was the first to make the journey up the stairs. Of the five girls involved in the event, Nikole was the only one walking on her own. The others, confined to wheelchairs, were carried by parents or family members.
They were Missy Rowland, 4, of Lakes of the Four Seasons; Mia Alvarez, 7, of Hammond; Nevach Cotton, 6, of Merrillville; and Sophia Burns, 10, of Crown Point.
Mimi Burns had one main purpose in mind when putting this national event on her calendar.
She said that having this occur on the same day around the country and the world made it all the more special. “We can truly see that we are not alone.”
Burns will join a group of Rett parents in February to run the Disney Princess half-marathon, along with Team Girl Power 2 Cure, to raise money and awareness for Rett Syndrome.
“I am not a runner, and will be grateful to simply finish the race,” Burns said. “However, I will continue to train, and bring to light this debilitating disorder that has touched our life so greatly.”