Imagine your healthy infant daughter’s development begins to slow and even regress, taking back milestones as she grows into a toddler. She may even begin to have seizures and lose what control she had over various bodily systems. An appointment with a neurologist reveals that your daughter actually has Rett syndrome, a genetic disorder that affects about 1 in every 10,000 females. Your child is left permanently disabled as the syndrome hinders every bodily system. Your baby, with a mind as sharp as any child’s, is a prisoner in her own body.
This diagnosis was given to Birmingham residents Brian and Marie Batehs’ 2-year old daughter Sarah Katherine, or Suki, on Nov. 3, 2011. Devout Melkite Catholics, the couple fell into a state of anguish and turned to the Lord for a cure. Instead, he gave them a mission.
“The Holy Spirit spoke to me, and told me ‘you should be honored that she is yours,'” Marie said. From that moment on, the Batehs accepted that it was not about them, nor was it about Suki — it was about making a difference. Just a few months later, the Batehs started the Suki Foundation.
When he first received the news of Suki’s diagnosis, Brian shed tears in front of his other four daughters. Confused, they asked him what was wrong. When he told them their younger sister was going to have to be in a wheelchair, his eldest said, “I’ll push her.” Brian described the moment as humbling. The Batehs do an extraordinary job of keeping the faith in the family. “She drinks Holy Water every day. She gets blessed with Holy Oil every night. And if we don’t do it, her sisters will do it,” said Brian of his other daughters.
They have an idol corner in their house. They even dedicated Suki to Mary, an Eastern Catholic practice that consists of dressing the ill child in blue Marian garments for two weeks during the months of May and August and praying for her with the church community nightly. “During those two weeks last year, she said the most words she’s ever said,” Marie said. Marie also hosts a monthly women’s bible study.
Because she can’t use her hands, Suki communicates through a computer that reads her eyes. Suki was lucky enough to get an accurate diagnosis very early in life, so she is able to walk on her own and have some use of her hands. With those hands, says her father, “she has touched more lives than I ever will.”
Bright and Lively, Suki is filled with a joy that most of us only dream of possessing. According to her parents, her happy place is church. “She just squeals and is so happy when she’s in church,” Brian comments. Suki does not allow Rett to define her. The girl is as sharp as a tack and will not stand for others viewing her as less than such. When she’s asked a simple question about her ABCs or colors, which she has known for years, she’ll often answer with the opposite and laugh. “She’s like, ‘I’m not going to tell you, because that’s the stupidest question you’ve ever asked me,” says Marie. She also enjoys math and reading challenging material.
The Batehs seem to be winning in the battle against the disorder. However, some families find themselves unable to provide proper care for their daughters because they haven’t gotten an accurate diagnosis. Suki would likely not have been diagnosed with Rett syndrome until much later in life had Marie not used her medical background to do research into Suki’s symptoms and have her tested for the MECP2 gene. The mission of the Suki Foundation, says Marie, is to “promote awareness for Rett syndrome within the community of Alabama, support families within the community, and also increase knowledge of the medical community so they can know how to diagnose it, and then also educate teachers and therapists on how to treat the condition, and teach our girls with Rett syndrome the best that they can.”
They have received tremendous unprecedented support from the community and Children’s of Alabama, and in turn have grown exponentially in the past two years. Events such as the Saint Elias Cedar 5k run, Slicefest, and the annual Raise the Roof for Rett function go towards funding the foundation. However, the Suki Foundation seeks to expand outside the community into areas that may contain misdiagnosed children. The foundation’s size has tripled in the three years since its inception, and the Batehs have no plans on stopping their work on what they feel is a blessed cause.
Retts syndrome has been called the “rosetta stone” of neurological disorders. Researchers are closer to curing Rett than they are to curing any other syndrome. If a cure is found, it will be that much easier to cure disorders like Autism and Parkinson’s. Retts is caused by a mutation of the MECP2 gene. This gene supposedly controls many other genes, causing the mutation to affect all bodily functions. Had Marie not had Suki tested for the MECP2 mutation, she likely would not have received her early diagnosis and care.
The Suki Foundation’s partnership with Children’s of Alabama allows Suki’s care to be monitored by one of the few Rett’s specialists in the world: Birmingham resident Doctor Alan Percy. The community is fortunate enough to have access to Dr. Percy’s work and are more likely to get a proper diagnosis than patients elsewhere.
The symptoms of Rett’s are heartbreaking: Girls affected often lose the ability to walk and use their hands. They often experience compulsive hand motions and diminished control of their eye movements. Girls affected by the disorder are often underweight due to loss of muscle and decreased head growth. As the disorder progresses, seizures may occur.
The silver lining is that the victims of Rett’s can improve cognitive processing skills as well as eye contact and communication as they age. Suki is a very intelligent child, and her foundation hopes to aid families in providing their daughters with the same level of care that Suki is blessed enough to receive.
The Batehs believe that God chose their family for Suki. The Lord works in mysterious ways: The Batehs serve to remind us that our trials are truly blessings in disguise: opportunities to inspire and make a difference within the community.