Shayna is an exceptionally pretty child, with expressive blue-gray eyes that seem to have a language all their own. She is generally good-natured and easygoing, with a hearty laugh and chubby legs, but she is easily stressed when tired or hungry.
In short, she’s your typical two-and-a-half year-old little princess.
However, Shayna is anything but typical. This adorable toddler, who lives with her doting parents in Dallas, Texas, cannot walk, talk properly (aside from a few words) or feed herself.
For Shayna, who was diagnosed last May with Rett syndrome, a rare neurological disorder that leads to severe impairments, the passage of time only means regression and additional challenges.
And yet, Shayna is a lucky little girl. Her amazing parents, Brooke and Barak Krengel, would do anything for their precious only child.
The Krengels, who met in college (Brooke—whose Jewish name is Sarah Beilah Genendel—is from St. Louis, while Barak is from Dallas), had been married for almost two years when they were blessed with a beautiful baby girl, whom they named Shayna. Their cherished newborn was full-term and healthy.
As Barak explained, “Shayna was a happy, easygoing baby, always laughing and wanting to have a good time. For the first few months she was reaching all her milestones, grabbing at toys, eating heartily, growing and developing normally. She even rolled over once or twice.”
The Krengels’ first stirrings of concern were voiced during a well visit with their pediatrician when Shayna was nine months old. The doctor pooh-poohed their worries, assuring them that their beautiful little girl was just a “late bloomer.”
“She basically told us not to worry and that everything was normal,” said Barak. “But we were her parents; we were the ones who spent hours every day with her. And our gut feeling was that something wasn’t right.”
Shortly before her first birthday, Shayna qualified for early intervention and began to receive physical therapy. Still, despite the many hours of effort, she wasn’t making progress.
Barak and Brooke, who both work full-time, were determined to figure out why their daughter kept forgetting important skills she had just mastered.
“For the next few months, we kept going from one specialist to the next,” Brooke recalled. “We visited a neurologist, a developmental pediatrician, an allergist and a behavioral therapist. We even had Shayna tested for autism, but the results were negative. No one could figure out what was wrong. We kept taking off from work for all these appointments. Fortunately, our employers were very supportive.”
By the time Shayna was 20 months old, the Krengels, members of the close-knit Jewish community of Dallas, were at their wits’ end. They were advised to make an appointment with a genetic specialist, who would run some tests to see if Shayna’s problems had a genetic component. In April 2017 Shayna was subjected to a series of blood tests and the Krengels were told it would take a couple of weeks for the result. It ended up taking a month.
“The wait was excruciating,” Brooke recalled. “We realized that something was seriously wrong, but we had no idea what it was or if it was curable. Then one sunny Friday afternoon, just a few hours before Shabbos, we got the phone call we’d been waiting for—and the news was horrible.”
The genetic counselor proceeded to tell them the results in a dry, matter-of-fact way, as if talking about the weather: “The results have been confirmed: It’s Rett syndrome. You can look it up online for more information.”
“There was no apology, no compassion or concern for our pain,” said Barak. “That’s all she said before hanging up and leaving us with our heavy burden. We couldn’t even reach our doctor for another month.”
The Krengels immediately went online, only to be frozen with shock and horror. The diagnosis was worse than the worst they’d been expecting. Both parents dissolved in tears.
Suddenly, everything became clear: Shayna’s non-progression, her inability to walk and talk, even her unique hand gestures, which had always baffled her parents.
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