You might soon hear a new song dedicated to a Quad City woman suffering from a rare disorder.
The song “Ariel” will be part of a CD “release party” organized by Blue Grass, Iowa musician David G. Smith on Saturday, May 17 at the River Music Experience in Davenport.
It’s dedicated to 22 year old Ariel Kean who was diagnosed as a toddler with a form of autism called Rett Syndrome.
While autism predominantly affects Caucasian boys, Rett Syndrome is almost exclusively a genetic disorder affecting girls.
It’s left Ariel unable to use her hands. Instead her mother says she constantly wrings her hands together.
But there are very few girls and women sharing Ariel’s challenges.
“We’ve served somewhere between 80 and 100 children and I have never had a child with Rett Syndrome,” says Quad City Autism Center director Michelle Smyth.
Ariel’s mother says only 30 girls and women in Iowa have been diagnosed with Rett Syndrome.
“The girls start out normal at birth and then they go into regression,” says Ariel’s mother, MaryLou Reiter-Kean.
“With Ariel, she lost speech. She’s still able to walk but some girls even lose that. They have a lot of medical issues. There are seizures, GI disorders, scoliosis. It’s rough.”
Rough, but not hopeless.
MaryLou says researchers have isolated the gene they think causes Rett Syndrome.
And they’ve even been able to reverse the disorder in mice
That’s why David G. Smith has a song dedicated to “Ariel”.
“We’re trying to raise awareness,” says Smith who has known the family for years and was touched by Ariel’s reaction to his songs during music therapy classes in the past.
“That’s our number one goal there and we’ll raise a few dollars hopefully.”
The release party for Smith’s CD “One House”, featuring the song “Ariel”, is Saturday, May 17 at the Redstone Room inside the River Music Experience in downtown Davenport.
Proceeds from the event and the auction of a handmade ukelele will benefit Rett Syndrome education.