A smile worth a thousand words

Marie Bateh vividly remembers the moment she noticed something different about her daughter.

Sarah Katherine Bateh, affectionately known as Suki, was born to Hoover residents Marie and Brian five years ago. She was the fourth born of the couple’s five girls.  

“All my other girls walked at 9 months, so I knew when she wasn’t walking at 10 months that something was up,” Marie said.

They took Suki to a pediatrician who told them not to worry and that all children develop differently. When Suki was a year old, Marie made a call to The Bell Center, still convinced something was not right. Marie’s sister, a special education teacher, noticed Suki looked like one of the children in her classroom who had Rett syndrome. Marie eventually went to see Dr. Alan Percy, one of the top doctors in the world for the disorder, at the UAB Rett Syndrome Clinic. 

By age 2 and after multiple tests, Suki was officially diagnosed with the disorder.

Rett syndrome (RS) is a neurological developmental disorder with a genetic cause that affects 1 in every 10,000 female births across the world. It is first recognized in infancy and seen almost always in girls and is often misdiagnosed as autism or cerebral palsy. 

It appears after an early period of near-normal development until six to 18 months of life, when there is a slowing down of skills. A period of regression then follows when the child loses communication skills and purposeful use of hands. Soon, repetitive hand-washing motions, gait disturbances and slowing of the normal rate of head growth become apparent as well as other problems that may include seizures and disorganized breathing patterns.

Suki is now 5 years old and currently enrolled in Trace Crossings Preschool. She is continuously undergoing physical, occupational, speech and music therapy. She cannot use her hands or her voice; therefore, she communicates using a computer screen. Marie describes heartbreaking moments of watching her daughter’s stomach swell due to her involuntarily holding her breath. 

Despite experiencing these painful symptoms, Suki’s smile easily lights up a room.

“She can say so much with her eyes,” Marie said.

Marie and Brian wanted to create awareness and a community of support for families with children with Rett syndrome. In 2011, they started the Suki Foundation in honor of their daughter. 

“I wanted to raise awareness, to help people point out the red flags of this disorder, and to educate both parents and medical professionals,” Marie said. “I also wanted to support the work of Dr. Percy at the Rett Syndrome Clinic at UAB and help us move closer to finding a cure.”

Marie communicates regularly with other parents whose children have the disorder and said three more girls in Birmingham were recently diagnosed with the disorder. With early detection and diagnosis, the life of a child with RS can be greatly improved. Funds raised by the foundation will assist families in early detection and assure early intervention by providing support, education and the most therapeutic services possible through early learning programs.

The Suki Foundation’s annual events include a 5K run in April, SliceFest in June, and the 3rd Annual Raise the Roof for Rett, which this year will be held on Nov. 1. The event will include live music, dinner, complimentary drinks and silent and live auctions. Dr. Alan Percy from the UAB Rett Syndrome Clinic will be a guest speaker.

“This is going to be a really fun event,” said Suki’s father, Brian. “It’s about creating awareness, and we want to encourage people to donate even if they can’t attend the event.”

Marie and Brian remain optimistic about their daughter’s future, and for now, their priority is creating awareness and helping Suki live as much of a full life as possible.

“It is our faith that has given us the strength to keep going. We believe miracles can happen,” Marie said. “We truly believe there will be a cure found in Suki’s lifetime, and we want girls with this disorder to be functioning at their highest level when that happens.”

To register for the event or to donate to the cause, visit smartparty.org/curerett. For more information about the Suki Foundation, visit sukifoundation.org.