The issue is personal for Kevin Black, brother of country music star Clint Black.
His daughter, Cortney, died when she was 16 of complications from Rett syndrome, a neurodevelopmental disorder that affects girls almost exclusively.
It is characterized by normal early growth and development that, beginning about age 12 to 18 months, is followed by a slowing of development, loss of purposeful use of the hands, seizures and the onset of intellectual disability.
The girls are unable to talk, most lose their ability to walk, and they become totally dependent on their parents and other caregivers.
“When Cortney first came into the world, her Mom and I were thrilled to have what appeared to be a healthy baby, but soon we were on a completely different journey than we expected,” Kevin Black says.
“There are so many challenges that come with Rett syndrome. These girls need someone with them 24/7. We had two sons who came after Cortney and their lives were changed forever as well.”
Now Black and his friend, Dave Clements, a freelance photographer, are teaming up to do what they can to help find a cure for Rett syndrome.
Clements had taken concert photographs of more than 200 musicians and in each the musician was raising a hand. He and Black sought the permission of those musicians to use the photographs in an upcoming book titled “Raising A Hand: A Photographic Music Festival With a Cause” (www.RaisingAHand.com).
Proceeds from sales of the book will help fund research that is making significant progress in finding a cure for Rett syndrome.
“It’s about trying to keep other families from going through what Kevin and his family went through,” Clements says. “The wonderful thing is that, with the strides they are making in research, we feel there is hope that a cure will soon be within reach.”
In addition to Kevin’s brother, Clint, musicians who agreed to let their raised-hand images be used for the cause included Sir Paul McCartney, Ringo Starr, George Strait, Willie Nelson, Jimmy Buffett and the Eagles, among many others.
“By bringing attention to Rett syndrome, we are giving these girls a voice because they can’t speak for themselves,” Clements says. “Because of Rett syndrome, they don’t even have the voice to tell their parents they love them.”
Rett syndrome is primarily caused by mutations on the X chromosome within a gene called MECP2, according to the International Rett Syndrome Foundation. Rett syndrome occurs worldwide in about one out every 10,000 female births, the foundation says.
During Rett Syndrome Awareness Month each October, the foundation tries to educate the public about the syndrome and raise money to support research.
Like other girls with Rett syndrome, Cortney Black, born in 1987, started her life with normal development. When her progress began to slow, doctors said to be patient and all would be fine, Kevin Black says.
“It wasn’t and the situation got frighteningly worse,” he says. “We were losing our child to something we didn’t understand. All the motor skills and social skills she had obtained slowly regressed to the point where she no longer could even say ‘Mom’ or ‘Daddy.’ ”
Finally, when she was 2, a group of physicians diagnosed Cortney with Rett syndrome. Black didn’t know what that was. He soon learned all its consequences, watching over the years as his daughter’s condition grew progressively worse, her body deteriorating with each passing day until she died in 2003.
It took time, but Black eventually freed himself of the blame for his daughter’s suffering and he settled on a new mission for his life.
“I began believing that Cortney was given to us for a purpose,” he says. “I want to do all I can to educate people and get them to join me in raising enough research funding to wipe out Rett syndrome. We will do it for the girls, their parents and their siblings. And we will win this fight in my lifetime.”
About Kevin Black and Dave Clements
Musician Kevin Black became interested in music at an early age. His latest record is “Kevin Black: SOLD OUT – Live at Dosey Doe.” His daughter, Cortney, died in 2003 at age 16 of complications from Rett syndrome and for the last decade Black has devoted his time and talent to the Rett cause.
Dave Clements is a freelance photographer who has had the opportunity to do photography in Africa, Alaska, Canada, Belize, Scotland and Iceland. His photography has been published across Texas, as well as nationally, and he also is a staff photographer for the Houston Livestock Show and Rodeo.
Clements’ and Black’s latest project together is an upcoming book titled “Raising A Hand: A Photographic Music Festival With a Cause” (www.RaisingAHand.com), with profits helping to fund research into finding a cure for Rett syndrome.