When Aya Hendawy landed in Boston after a long flight from Egypt, sightseeing was the last thing on her mind. With her critically ill daughter, Laila, in her arms, she went straight from the airport to the emergency department at Boston Children’s Hospital.

Her plea to the medical team was simple: Please save my daughter.

A desperate search for answers

Laila was only about 14 months old, but she was already battling serious health problems. She had severe, persistent diarrhea, struggled to gain weight, and rarely slept well. Despite the alarming symptoms, no one could determine what was causing them.

Before arriving in the United States, Laila had reportedly been misdiagnosed nine times in Egypt. She was treated with steroids that did not address her actual condition. The medication weakened her bones so severely that both of her legs eventually broke.

For Aya, the situation brought back a devastating loss. Before Laila was born, one of her older sisters had died in infancy after experiencing multiple health complications without receiving the care she needed.

Terrified that she might lose another child, Aya refused to stop searching for answers. When a friend in the United States told the family about Boston Children’s Hospital, she decided to take action.

She left Egypt with Laila, hoping that doctors thousands of miles away could finally uncover the truth.

A diagnosis at last

Laila remained at Boston Children’s Hospital for three months while specialists conducted a comprehensive medical evaluation. The testing finally revealed that she had trichohepatoenteric syndrome, an exceptionally rare inherited disorder.

According to information published by the hospital in 2021, fewer than 100 cases had been reported worldwide at that time.

Trichohepatoenteric syndrome primarily affects the intestines, liver, and hair. It can cause chronic diarrhea, poor nutrient absorption, abnormal hair, liver disease, immune system problems, and other serious complications. Without proper medical care, some of those complications can become life-threatening.

Although there is currently no cure for the disorder, receiving an accurate diagnosis gave the family something they had been seeking for months: an explanation.

After so many incorrect diagnoses, Aya finally understood what her daughter was facing and what kind of care she would need.

A team working together for Laila

Because the condition can affect several parts of the body, Laila needed more than one doctor. Her care involved a coordinated team of specialists in gastroenterology, immunology, liver health, nutrition, and pediatrics.

She began receiving home parenteral nutrition, which delivers essential nutrients directly into the bloodstream when the intestines cannot absorb enough through food. The treatment helped her gain weight and continue growing.

Doctors also used regular FibroScan examinations to monitor her liver and watch for signs of damage. In addition, Laila participated in research studies designed to help medical experts better understand rare congenital intestinal disorders.

For Aya, the teamwork among Laila’s doctors made an enormous difference. Instead of treating one symptom at a time, the specialists communicated with one another and looked at her daughter’s health as a whole.

Most importantly, Aya felt that they saw Laila as a child who mattered—not simply as another medical case.

A family’s sacrifices

Getting Laila the care she needed came at a high personal cost.

Her father, Karim Amer, continued working in Egypt and traveled to Massachusetts several times a year to visit Aya, Laila, and Laila’s sister, Jude. Aya also stepped away from a successful teaching career so she could devote herself to her daughter’s care.

Despite everything the family gave up, Aya said she had no regrets. To her, the decision was not a sacrifice that required debate. It was simply what she needed to do as Laila’s mother.

Those choices helped give the little girl a future that once seemed uncertain.

After she stopped receiving the inappropriate steroid treatment, Laila’s bones were no longer dangerously weak. She became active enough to run, jump, and dance. She loved drawing, dreamed of taking ballet lessons, and was preparing to begin preschool.

Although many questions about her long-term health remained unanswered, Laila was finally able to experience the childhood her family once feared she might never have.

For Aya, Boston Children’s Hospital became the family’s second home. Whenever Laila became seriously ill, her mother could not always know what would happen next. But she knew her daughter was surrounded by doctors who understood her condition and would do everything possible to care for her.

This article was rewritten based on a patient story published by Boston Children’s Hospital on June 4, 2021.