A JOURNEY OF DETERMINATION AND ADVOCACY

Within a matter of weeks after Ela was born, her parents — Mai and Alex Allam — were concerned that their newborn’s constant crying, limited development, and other unusual behaviors were symptoms of a serious problem. Medical tests confirmed their fears. Ela had suffered a stroke in utero, and doctors tried to prepare the Allams that she may not be able to walk, talk, or develop normally.

Immediately after her diagnosis, Ela began to undergo physical, occupational, and speech therapies and receive developmental interventions near their New Jersey home. At 18 months old, health care providers advised her parents that Ela had probably already reached her potential, trying to prepare them for what was likely to be a long road ahead.

Unwilling to accept this fate and dissatisfied with the level of support Ela was receiving, the Allams were determined advocates, pursuing further guidance and ultimately choosing to move to North Carolina.

In the years following their relocation, the family expanded, and while Ela experienced gradual improvements, significant deficiencies persisted, including a weakened left side. With traditional treatments failing to provide her with lasting relief from chronic seizures, Ela’s condition only intensified. By age six, she was suffering from increasingly severe and more frequent epileptic episodes.

Concerned and single-minded in their loyalty to Ela, the Allams researched solutions to the debilitating seizures that threatened their daughter’s well-being. Within just a few weeks after learning about Duke Children’s and Muhammad Zafar, MD, pediatric epileptologist and pediatric neurologist and director of the Epilepsy Monitoring Unit, they were able to secure an appointment for Ela.

“From the first time we met with Dr. Zafar, we felt hopeful. He quickly instilled confidence in us that he would be able to help Ela,” said Mai Allam, Ela’s mother. “He listened to us. He allowed us to explain Ela’s story and ask questions. Then, he immediately began to provide us with answers and share possible solutions based on his experience treating other children. He covered everything; he clearly understood what we were going through.”

TAILORED SURGICAL INTERVENTION

Advanced testing revealed that Ela’s repeated seizures were limited in scope, only impacting the left hemisphere of her brain. With this information in hand, Zafar — part of a collaborative team at Duke Children’s — introduced the Allams to Matthew Vestal, MD, MBA, MHA, assistant professor of neurosurgery and pediatrics, and pediatric epilepsy neurosurgeon. Together, dedicated to providing Ela with a personalized care plan and innovative thinking, Zafar and Vestal agreed that the traditional surgical approach to epilepsy — removal of the malfunctioning part of the brain — would likely pose the risk of further complications, including an abnormal fluid buildup known as hydrocephalus, which could prove fatal.

Instead, Vestal, with his surgical team, employed specialized techniques tailored to Ela’s unique situation that would minimize risks and maximize outcomes. Through a complex series of surgical steps, Vestal successfully disconnected the dysfunctional side of Ela’s brain, effectively halting the spread of seizures without compromising her vital functions or cognitive abilities.

Zafar underscores the significance of the approach. “Dr. Vestal’s surgical technique was intricate; he meticulously and systematically severed the damaged portion of Ela’s brain that was threatening her potential for normalcy and a full life,” said Zafar. “It was gratifying to see that she and her family had a newfound sense of peace and would live free from the constant fear of seizures.”

A NEW DAWN: RECLAIMING CHILDHOOD THROUGH PERSONALIZED CARE

Ela’s post-surgery progress was nothing short of remarkable. Within weeks, she was running and playing like other children her age, reaching developmental milestones and surpassing expectations. Her parents describe their daughter’s joy and confidence as a testament to the profound impact of Duke Children’s care on their family’s life.

For Vestal, Zafar, and their team members, Ela’s story inspires their work and is emblematic of Duke Children’s mission, which is centered on excellence in clinical care, innovation, and leadership. “Each epilepsy patient and their situation is as unique as a snowflake,” Vestal explains. “It’s for this reason we prioritize providing individualized care to each of our young patients.”

According to Zafar, only 65 percent of children suffering from the effects of epilepsy will benefit from traditional medication. “Therefore, at Duke, we are particularly focused on the 35 percent of patients who don’t respond to common treatments,” said Zafar. “Through the support of generous donors, we can continue to drive innovation, expand our fellowship program, further our research, and increase our levels of patient care.”

For Ela, now 10 years old, and her family, the future is brighter than ever. “Each day feels like it is filled with possibilities. Yesterday, I told my wife, ‘Look at her, she is truly happy,’” said Alex Allam, Ela’s father. “The doctors at Duke Children’s saved our daughter’s life; they have made it possible for her to have a childhood she can enjoy and a future to dream about.”

The Allams’ hopes for Ela’s future now are boundless, a testament to the transformative power of compassionate care and unwavering dedication.