Cairo – Maii Abdo:
Asma never imagined that the birth of her daughter Farida on May 17, 2020, would mark the beginning of an extraordinary journey—one where fear and hope intertwine.
Farida was born a perfectly healthy child, growing, laughing, playing, taking her first steps like any other toddler, gifting her mother the purest joys of motherhood.But at the age of two, everything began to change.
Asma noticed unusual hand movements like clapping inward. At first, she thought it was a game, but soon realized it was something more serious.“I watched in confusion,” she recalls. “She no longer held her toys, ate with her hands, crawled, walked, or even spoke as she used to.
It felt like her life was slowly slipping away before my eyes.”
The Search for Answers
Worried, Asma rushed her daughter to a pediatrician, who immediately referred her to neurologists.
After many consultations, they finally met an experienced doctor who suspected the diagnosis almost instantly.“She told me it was likely Rett Syndrome, but asked for a genetic test to confirm,” Asma recounts.The waiting was agonizing.
Asma turned to the internet for answers and was devastated by what she found: a rare genetic disorder that affects only girls, causing severe regression in motor and cognitive skills, loss of speech and mobility, seizures, and breathing difficulties.
Hope Amid the Darkness
In her search for guidance, Esma discovered a support group on Facebook, founded by Dr. Aya, another mother of a child with Rett Syndrome. “I felt I wasn’t alone,” says Asma.
“The mothers there support each other. I learned that physical and occupational therapy are the only ways to ease the symptoms and preserve what abilities our daughters still have.
”The genetic test later confirmed the diagnosis. From that day on, Farida began her journey with physical, sensory, and occupational therapy—a path filled with exhaustion, yet also carried by hope.
New Challenges
A year later, Farida developed what doctors described as “silent seizures”—abnormal brain activity with no visible external signs. This meant regular medications and EEG follow-ups every three months.
“I lived between fear and hope,” Asma says. “But thankfully, the seizures gradually lessened, giving us a glimmer of relief.”In 2023, a new medication, Daybue, was introduced in syrup form.
While it helps ease symptoms, it is not a cure—and its staggering cost, nearly 1.9 million Egyptian pounds per bottle, makes it out of reach for most families.
From Pain to Purpose
Instead of succumbing to despair, Asma transformed her struggle into a mission.
She created a social media page for Farida, sharing videos of her daily life and launching awareness campaigns to help other mothers recognize early signs of the syndrome.“The page became more than an outlet for me—it turned into a beacon of hope for many families,” she explains.
Together with Dr. Aya, she conducted a survey to record cases in Egypt. Results showed around 100 girls diagnosed with Rett Syndrome—55 confirmed through genetic testing, and the rest through clinical diagnosis.
A Glimmer of Light
Today, after years of relentless effort, Farida is showing signs of progress. With a tearful smile, her mother says:“Farida can now stand with my support and take a few steps.
They are small steps, but for me, they are a monumental victory.”Though the road remains tough, hope persists. Recent genetic research has introduced a new injection tested on eight girls worldwide, with promising early results—though it is still under trial.
“We are waiting with all our hearts for the day when a definitive cure arrives,” Esma concludes.
A Final Word
Farida’s story is not just about a little girl battling a rare condition—it is a testament to the strength of motherhood, capable of turning pain into purpose and despair into hope.
While medicine stands at the threshold of new discoveries, the resilience of mothers remains unmatched.
With her radiant smile, Farida writes her own story of resilience—reminding us all that no matter how harsh life may be, there is always room for hope.