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Rare Conditions

How a Diagnosis of Rett Syndrome Inspired a Community of Advocacy

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 arrive to a loving household stocked with everything she would need, including plenty of hand-me-downs from her siblings. She would also get 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.

Bisharo was as ready as any parent could be to welcome her newborn, and she couldn’t wait to meet her.

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 Mom’s 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 she wasn’t nearly as active as her siblings had been at her age.

“I would watch her stare at a toy car, wanting to pick it up and play with it, but not be able to. It never occurred to me that she was losing her abilities right before my eyes,” says Bisharo. Doctors told Bisharo it was too soon to be worried because every child progresses at their own pace, so she continued on with normal life while monitoring Amatullah closely.

Then the crying began.

“I was always able to soothe my other children as babies when they cried, but it was different with Amatullah,” says Bisharo. “It was nonstop. She was inconsolable.” Soon after the crying, ear infections began constantly bouncing from one ear to the other, and Amatullah began losing her ability to breastfeed. A year went by, and with the regression and crying continuing, Amatullah’s primary doctors referred Bisharo to Gillette Children's for answers.

At Last, a Diagnosis

The journey to a diagnosis of Rett syndrome was a trying time for Bisharo. Bisharo watched as Amatullah’s regression worsened, even as she began physical and cognitive testing at Gillette. Bisharo was growing desperate to find anything that would bring Amatullah back to the happy baby she longed to see again.

“Looking back, it feels like she cried for 2 years straight before I got her diagnosis,” says Bisharo. “To say I was exhausted would be an understatement.”

Rett syndrome is a rare neurodevelopmental disorder that affects brain growth and development. It starts in childhood, randomly occurring (almost exclusively) in girls. The regression of skills that Bisharo observed in Amatullah is one of the telltale signs of Rett syndrome in its early stages.

However, many of the early symptoms can be attributed to a number of other conditions, making it challenging to diagnose in infancy. As one of just 14 U.S. hospitals designated a Clinical Research Center of Excellence by the Rett Syndrome Foundation, Gillette was the best place Amatullah could be.

Nicole Williams Doonan, MD, a pediatric neurologist at Gillette, officially diagnosed Amatullah with Rett syndrome at age 2 in July 2013. Getting a diagnosis was an important first step in developing a comprehensive treatment plan for Amatullah. 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.

Starting the Conversation

Bisharo finally had answers, and now faced the reality of what Amatullah’s future would look like.

“I had no idea Rett syndrome existed,” explains Bisharo, who up until that point had no experience living with or caring for a person who has a disability. “As soon as I started hearing things like ‘your daughter won’t be able to walk or talk’, I shut down. I cried for 7 days straight. I thought we were searching for a one-time solution to a temporary problem, not coming up with a course of treatment for a lifelong condition.”

Bisharo didn’t tell anyone for a few months after finding out, mainly because of a stigma surrounding disabilities.

“Because no one around me spoke about dealing with disabilities, I felt I was alone and had no support,” explains Bisharo. “I later learned that not only are disabilities just as prevalent within my community as any other, but I had close friends who had kept their child’s disability a secret from me for years until I shared Amatullah’s story. A door had opened, and I put my trust in God to guide my family and me on this new path.”

A Mother’s Promise

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, 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 with weights on to help her stand and be balanced, and also on land with a walker. In occupational therapy, she learned how to work on her grip, and speech therapy helped her communicate. At the same time, Bisharo would double down on everything at home to help Amatullah progress even further.

“I would wake up early every day to take her on walks,” recalls Bisharo. “When I would cook, I’d make sure she was holding onto something and standing next to me in the kitchen. I would take her hand in the grocery store and have her walk down the aisles with me. I always kept her stroller for her to take breaks when she got tired, but I never gave up on her potential to progress.”

Upon learning Amatullah would need a gastrointestinal tube (G-tube) to be fed, Bisharo promptly switched her nursing studies to nutrition. She bought books and a blender to learn how to make her own baby food and smoothies that were packed with all of the nutrients Amatullah needed to keep growing.

I was determined to provide the best care for my daughter, even when we weren’t at Gillette,” says Bisharo. “I also began taking herbal studies classes to learn how I could support Amatullah with natural remedies for sleep and anxiety.”  

Despite being told her daughter would likely never walk, Amatullah began taking independent steps just three months ago. “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.”

Becoming an Advocate

Bisharo felt compelled to address not only the stigma surrounding disabilities, but also to offer herself as a resource to other mothers in the Somali and Muslim community who need support when they learn their child has a disability.

“Right now, my focus is on going around my community with Amatullah—to religious gatherings, colleges and more— to tell our story, raise awareness, and help people understand what resources are available to them if they ever find themselves in a situation like mine,” says Bisharo. “My hope is that one day all of the common places where our community gathers will be fully accessible. I would also like to see more Somali and Muslim youth consider careers with children and adults who have disabilities so that new families have a familiar face who can understand their culture and language, and help accommodate them.”

When she is not busy being a super-mom and working to support those in her community, Bisharo is also extending her reach across the globe to a network of women she cares for deeply.

“There is a 1-800 number that myself and many other Somali women all over the world call into to discuss a wide range of topics and support one another. Every week I get time to discuss health and wellness with everyone,” explains Bisharo. “When I decided to share my story with all of the women and tell them about Amatullah, nearly 70 of them came forward to offer kinds words and personal stories.”

Celebrating New Milestones and Making Memories

As if all that is not enough to keep a mom of four busy around-the-clock, Bisharo is still making time to create memories for Amatullah.

“I just got back from Kenya with Amatullah! She loved it so much,” says Bisharo. “So many people tried to tell me not to travel internationally with her, and that it would be too much stress on me. I take Amatullah with me everywhere, and will NEVER go somewhere that she is not welcome or accommodated.”

Still, Bisharo is not done making an impact on her community and family. Soon, she will be adding the title “children’s author” to her long list of accomplishments.

“Right now I am taking writing classes because I would love to write books that accommodate children who have disabilities,” she explains. “My daughter engages with books differently than other children. I want to make Amatullah her own book with pictures of her, so I can better explain to her and other children what her life is like.”

Bisharo works tirelessly to make the world a better place for Amatullah and kids like her, while taking time to celebrate the new milestones—at whatever pace they come.

“Being involved in my community as a resource for parents has been incredibly healing for me,” says Bisharo. “We now have a little support system of people going through similar journeys and we can all be there for each other. We are taking it one day at a time.”

For more information and resources about Rett syndrome, visit