Erica Techo
Suki Foundation
The Bateh family founded the Suki Foundation in order to help raise funds for research and education for Rett syndrome and related neurodevelopmental disorders.
Sarah Katherine ”Suki” Bateh was born Sept. 24, 2009, and lived a happy, healthy and typical first six months. But in time, her physical therapist mother, Marie Bateh, said she started seeing “red flags” that caused concern about her fourth daughter’s development.
“Her muscle strength seemed low; she wasn’t walking or rolling, and before her sisters were age 1 they were saying 50 or more words, which she wasn’t,” Marie Bateh said. “A lot of people, including the pediatrician, said I was making too much of it, that she was developmentally delayed, but in my heart, I knew something was wrong.”
Marie Bateh took matters into her own hands, going through the state’s early intervention system where testing showed Suki qualified for state services because she hadn’t met the appropriate development milestones. And while physicians still couldn’t determine a diagnosis, 1-year-old Suki began outpatient therapy through United Cerebral Palsy and the Bell Center.
“The earlier the intervention, the better the potential to improve,” Marie Bateh said. “She wasn’t walking, talking, using her hands, and she was 1 year old but acting 6 months. So, while we were searching for answers, we were doing as much therapy as possible to try to catch up.”
Meanwhile, a neurologist suspected Rett syndrome, a debilitating neurological disorder that predominantly affects females who experience an early period of apparently normal or near normal development until there is a slowing or stagnation of skills.
The problems that develop are in the workings of the brain responsible for cognitive, sensory, emotional, motor and automotive function. Areas affected can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function and even chewing, swallowing and digestion. But despite physical disabilities, those with RS are believed to function mentally at a much higher level than once thought.
“We looked it up, and it was the worst of the worst,” Marie Bateh said. “But when the doctor ran genetic testing looking for mutations, it came back negative, and we thought our prayers were answered.”
But despite the good news, Suki eventually began withdrawing into her own world and didn’t respond when her name was called, Marie Bateh said.
“That was when my sister, a special-needs teacher, said it reminded her of a little girl she knows with Rett syndrome,” she said. “That’s when we sought out Dr. Alan Percy at UAB who studied under Andreas Rett, the doctor and researcher for whom Rett syndrome is named.”
After further testing — that was positive — Dr. Percy diagnosed Suki, then 2 years old, with Rett syndrome.
“But we were thankful to finally have an answer,” Marie Bateh said.
And the family had another reason to be thankful — it was Marie Bateh’s relentless push to create a proactive therapy plan at such an early age that in all likelihood made a major difference in Suki’s situation and her future.
While 80 percent of children with RS are in wheelchairs, Suki learned to walk, and though she had lost the use of her right hand, she uses a pointer in her left. At 5 years old, she began holding her breath, which interferes with chewing and swallowing, so she has a feeding tube — but is able to eat normal blended food.
And while she can’t communicate verbally, Suki is cognitively aware, which has enabled her to learn and now use a Tobii — an eye gaze computer system that allows the user to look at words and letters on a screen that are then generated into speech.
Last year, Suki entered kindergarten at Prince of Peace Catholic School. She is now a first-grader attending every day with her communications partner, Sharon Baroody, who assists her in her class activities and provides any needed care.
Baroody, who has known her charge all her life, describes Suki as a determined child who loves to be around others.
“And she wins over those who might be tentative around her because she communicates very well, especially with her eyes,” she said. “She’s like any other 7-year-old who has a lot to say and likes to talk about what she wants to talk about. Even though she can’t do all that others can, she can do a lot and handles all her challenges with grace.”
Someone else who’s known Suki all of her life is Abbie Bateh, 11, one of her four sisters, who said Suki is “the quiet one who likes to tell us a lot of jokes.”
“We all listen to music together, read stories, watch TV, jump on the trampoline and talk on her Tobii,” Abbie said. “We learned how to use her Tobii, and it’s so cool to talk with her. It’s like her language.”
After Suki’s diagnosis, Marie and Brian Bateh realized there were other parents who didn’t know about state-provided services and could lose valuable time in getting their children assistance.
“We felt there was a need for education and family support, and after talking with Mike Warren [president/CEO] at Children’s of Alabama, decided to start the Suki Foundation that would be our voice and promote awareness and assist children in reaching their potential through early intervention services,” Marie Bateh said. “We’re about halfway to our goal of $1 million, money that will be matched for research at UAB and for an area clinic that will help sustain medical care for children in the Southeast.”
Percy said he “wholeheartedly supports” the Batehs effort and dedication to the foundation. Funding from the foundation is matched by UAB to create an endowed professorship specifically to study Rett syndrome and related disorders.
“The Batehs have been stalwart supporters of this initiative and have worked tirelessly for the past five years or more to build this funding. As we work to develop effective treatments including a fundamental cure, this effort will allow UAB to continue to attract talented clinician-scientists and fundamental research experts to this task,” Percy said.
Marie Bateh said she, her family and countless others maintain great hope and faith that “God in his time will save our girls and a cure will be found.”
“Meanwhile we will concentrate on providing better quality of life for these children and give them the best possible life we can, regardless of the challenges,” she said.