Before her daughter Amatullah was born, Bisharo Jama prepared for her arrival in the same way she had for Amatullah’s three older siblings. Amatullah would have an aqiqah ceremony performed in her honor— an Islamic tradition of celebrating a new life by feeding one’s community, with a focus on those in need.
Amatullah’s birth and first few months of life went by smoothly. At a few months old, Amatullah seemed just as chubby, beautiful, and healthy as her siblings were at her age. But then she started to change in ways Bisharo never anticipated.
A Growing Concern
Bisharo went from cheering Amatullah on as she learned to grab toys and books to watching helplessly as Amatullah forgot how to do those things—opting instead to keep her hands in her mouth. Amatullah soon started to miss more early-childhood milestones. At 6 months old, it became clear to Bisharo that Amatullah wasn’t nearly as active as her siblings had been at her age.
Doctors told Bisharo it was too soon to worry because every child progresses at their own pace, so she continued with normal life while monitoring Amatullah closely. Then the crying began.
“It was nonstop,” Bisharo says. “She was inconsolable.” Soon after the crying, Amatullah began losing her ability to breastfeed. After a year of the regression and crying, Amatullah’s primary doctors referred Bisharo to Gillette Children’s for answers.
At Last, a Diagnosis
The regression of skills that Amatullah experienced is one of the telltale signs of Rett syndrome in its early stages. However, many of the early symptoms can be attributed to several other conditions, making it challenging to diagnose in infancy. As one of just 18 U.S. hospitals designated a Clinical Research Center of Excellence by the International Rett Syndrome Foundation, Gillette was the best place Amatullah could be.
Nicole Williams-Doonan, MD, a pediatric neurologist at Gillette, diagnosed Amatullah with Rett syndrome at age 2 in July 2013. This was an important first step in developing a comprehensive treatment plan for Amatullah.
A Mother’s Promise
Bisharo finally had answers and now faced the reality of what Amatullah’s future would look like. As soon as she started hearing things like ‘Your daughter won’t be able to walk or talk,' Bisharo made a promise to herself and Amatullah.
“I was going to do everything in my power to provide the best care and opportunities for my daughter,” Bisharo says. “And that started with Gillette on my side.” Amatullah worked hard each time she came to Gillette for an appointment. Her physical therapist worked with her in the therapy pool and on land. In occupational therapy, she worked on her grip, and speech therapy helped her communicate.
Despite being told her daughter would likely never walk, Amatullah can take independent steps. “Every day I see her get stronger,” says Bisharo. “Now when we take her to the park to walk, her siblings and I cheer her on and watch her face light up with each step she takes.”
Although there is not yet a cure for Rett syndrome, treatment can help slow the loss of abilities, improve or preserve movement, and encourage communication skills. Specialists at Gillette work closely with groups such as the International Rett Syndrome Foundation and the Midwest Rett Syndrome Foundation, to ensure that patients are receiving the best course of treatment.
