'Raising A Hand' Raising Awareness For Rett Syndrome | WPBN

CRAWFORD CO., Mi. (WPBN/WGTU)--A movement to raise awareness for Rett Syndrome, along with raising money to find a cure, is coming to northern Michigan.

"Raising a Hand" is a book put together by photographer Dave Clements and Kevin Black, country-singer Clint Black's brother. More than 200 recording artists, including Paul McCartney, Clint, and Michigan's Bob Seger and Kid Rock, are featured in the book. Proceeds go to supporting raising awareness for Rett Syndrome and helping fund a cure.

Crawford County 12-year-old Naomi Parish has Rett Syndrome and is also featured in the book.

Kevin Black will be performing in a concert Thursday to promote the book, raise awareness for Rett Syndrome, and to raise money to help find a cure. The concert will feature Naomi and her family.

"Everyday that goes by, she has that smile on her face," Donna Wright, Naomi's grandmother, said. "She thinks she's the lucky one. But, we are, to have Naomi in our lives. So, tomorrow's going to be a wonderful day. We're going to raise lots of awareness for this rare disease."

Rett syndrome, as described on the Raising a Hand website, is a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys.

Black's daughter had Rett Syndrome and died at the age of 16-years-old in 2003.

"Life seems normal, everybody's excited, going to have your first beautiful child," Kevin Black said. "They come into the world and they are just that. Then, after a certain period of time, whenever your daughter grows and everything's exciting and you can't wait for the next giant step, and they learn to walk, talk and feed themselves, and then something goes terribly wrong. You don't know what it is. So, that's the introduction to Rett Syndrome. So, I lived 16 years with a daughter that was basically an infant for her entire life."

Black also says, "I want to see a cure for Rett Syndrome in my lifetime."

Black travels with Clements to promote the book. It's next stop: The Upper Peninsula. The concert will take place at Bay Mills Casino on Thursday at 7 p.m. Tickets are $10 and you can get them at the door.

"We are just blessed that we have a wonderful community here in Michigan and even through all of the states," Wright said. "Rett doesn't stop in Michigan. Rett is all over the world. So, we have to try to find a cure because it doesn't just affect Naomi. It affects thousands of girls with Rett Syndrome. We want their lives to be full and happy. As you can see, Naomi's so far as full and happy."

If you'd like to support this cause, you are asked to visit the Raising a Hand website.

More than $1,400 were raised at a pool tournament on Sunday by community members and the Johannesburg Fire Department for this cause.

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