Alabama Bright Lights: For one family, the best gift ever
Above: Marie Bateh with daughter Sarah Katherine, who suffers from Rett syndrome.
Marie Bateh grabbed my wrist and covered her mouth with her other hand.
“Oh my gosh, if she makes it on her own up that step, it would be the first time ever.”
Six-year-old Suki, diagnosed at age 2 with Rett Syndrome, hesitated at the door between the living room and the sunroom. She slowly and carefully placed her left foot on the step, and finally pulled up with unbreakable determination and into the living room.
Marie gasped.
It was a moment. A moment in the life of little Suki that she may not remember as big or meaningful. But to her mom, moments like this mean the world. The Suki Foundation was born from seeking moments like these for all the families struggling with this rare disease.
Educating the community on Rett Syndrome from Alabama NewsCenter on Vimeo.
“I feel so privileged when a newly diagnosed mom comes to me with fear, doubt and depression,” Bateh says. “I am able to tell her that there is hope and that we are here to help. I feel like that is our purpose. When you start navigating this special-needs world, it’s scary and lonely. The system really doesn’t give you that much support. We give these newly diagnosed families some avenues to say, ‘You’re going to be OK. It’s going to be hard, but we’re here to help.’”
Sarah Katherine, affectionately known as Suki, requires around-the-clock care with tube feedings and constant attention. But somehow, the Bateh family figured out how to make her the reason for many beautiful moments in their lives. She loves to watch her favorite shows and has a computer that she interacts with. Upon being taken away for a feeding, she fussed until her mom returned her to the computer. “She loves that thing,” Bateh said.
Rett syndrome is a neurodevelopmental disorder that almost always affects girls. It is characterized by slow development, loss of use of the hands, slowed brain and head growth, difficulty walking, seizures and intellectual disability. But those manifestations are only a distraction for the Batehs.
According to Marie and her husband, Bryan, Suki is the best gift ever.
Six-year-old Suki shares a tender moment with her mother.
“When she was diagnosed, I was screaming to God, ‘Please don’t let it be Rett syndrome,’’ Bateh said. “I then calmed down. She was in the crib crying, then I had the feeling that I should be honored she is mine. That was what gave me strength.”
The Batehs and the Suki Foundation are out to educate about this rare disease. Initially, the girls were thought to be cognitively low, but new research has showed they are bright and are able to learn, write, spell and communicate.
“We have to go out into the community and teach that the girls are in there, they’re just locked in a body that doesn’t work for them,” Bateh says. “They have so much potential, it’s us that need to learn how to help them to be the strongest they can be for the day when a cure comes.”
I asked the entire family, Marie, Bryan, Anna, Abbie, Elizabeth, Suki and little Julia, to sit on the couch for a picture, and they started singing to Suki. She looked around and smiled, and I stood there in awe. A regular family has found a way to make a special child truly feel like the “best gift ever.”
That monumental step she took into the living room is one of many firsts.
For more information, visit The Suki Foundation.
Alabama Bright Lights captures the stories, through words, pictures and video, of some of our state’s brightest lights who are working to make Alabama an even better place to live, work and play. Award-winning photojournalist Karim Shamsi-Basha tells their inspiring stories. Email him comments, as well as suggestions on people to profile, at karimshamsibasha@gmail.com.
