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Patient Stories

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At Children’s National Hospital, we provide compassionate, professional care to thousands of patients every year. Our patients come from all over the United States and from more than 20 countries around the world. They have many different conditions and experience unique paths on their treatment journeys – but through it all they experience the same level of warm, family-centered care. Discover our patients' stories to understand their journey and see how it may relate to your own.

Ryan Alam, a teen fighting a rare neurodegenerative disease, tandem skydives with SFC Chris Acevedo of the U.S. Army Parachute Team. Photo courtesy U.S. Army Parachute Team, the Golden Knights.
Ryan A's Story
Ryan Alam, a teen fighting a rare neurodegenerative disease, tandem skydives with SFC Chris Acevedo of the U.S. Army Parachute Team. Photo courtesy U.S. Army Parachute Team, the Golden Knights.

Ryan A's Story

Ryan has neurodegeneration with brain iron accumulation, or NBIA. Of the different types of NBIA, he has mitochondrial-membrane protein-associated neurodegeneration, or MPAN, a disease in which a surplus of iron accumulates in the brain and causes it to deteriorate. Tuba Alam, Ryan’s mom, says that despite his condition, his goal in life is to help others like him find a cure so that they can live a full life.

Kensley smiling
Kensley's Story Rhabdomyosarcoma
Kensley smiling

Kensley's Story Rhabdomyosarcoma

Just before Christmas, Nkenge and Tanya took their 2-year-old daughter Kensley to the Emergency Department because she was complaining of stomach pain and they could feel a bulge in her abdomen. Kensley was diagnosed with rhabdomyosarcoma and continues to received treatment from Amy Hont, M.D., and the multidisciplinary team of surgeons, gynecologists and radiation oncologists at Children's National.

Isabel sitting on bed
Isabel's Story Non-Hodgkin Lymphoma
Isabel sitting on bed

Isabel's Story Non-Hodgkin Lymphoma

Daniela and Steven knew something wasn’t right when their 4-year-old daughter, Isabel seemed to have uncharacteristically low energy at her grandparents’ 50th anniversary party. After advice from urgent care, Isabel's parents took her to Children's National where Shana Jacobs, M.D. diagnosed and began treatment for Burkitt lymphoma, a rare and extremely aggressive form of non-Hodgkin lymphoma.

Bella claps her hands while wearing pink eyeglasses and a red hair bow
Bella's Story Epilepsy and Seizure

Bella's Story Epilepsy and Seizure

In the first weeks of life, Bella underwent a series of procedures that her doctors and family agreed were necessary to end constant seizures from hemimegalencephaly (HME), a rare brain disorder in which one half of the brain grows abnormal and large and misbehaves by triggering repeated difficult seizures.

Thomas rests in a hospital bed.
Thomas's Story Duodenal Atresia or Stenosis in Infants
Thomas in a soccer uniform

Thomas's Story Duodenal Atresia or Stenosis in Infants

Thomas’s internal and external challenges, all considered individually very rare, added up to an extremely rare combination known as VACTERL association.

Cayden and Reagen as babies laying next to eachother sleeping
Cayden's Story Aortic Coarctation
Cayden and her family sitting outside

Cayden's Story Aortic Coarctation

Cayden was born with a life-threatening complex congenital heart defect. Learn how the hybrid procedure for HLHS helped Cayden.

side by side photo Kaylee Townsley Roxi Vasquez
Kaylee and Roxi's Story Kidney Conditions

Kaylee and Roxi's Story Kidney Conditions

Kaylee Townsley, a seventh-grader, is 12. Roxi Vasquez, a high school senior, is 18. They live in different towns and attend different schools but became "sisters" as they shared the same kidney transplant experience.

Sadie leans over pastel-colored blanket
Sadie's Story Newborn Neurologic Disorders

Sadie's Story Newborn Neurologic Disorders

Sadie is one of hundreds of infants with acute encephalopathy who have received whole-body therapeutic hypothermia at the Children's National neonatal intensive care unit. Whole-body therapeutic hypothermia is offered in the first few hours of life to preserve brain cells and to stave off disability or death.

Baby Nick in a sled
Nick's Story Omphalocele
Nick's Family

Nick's Story Omphalocele

When Nick Cornelius passed his pediatrician’s two-year-old well-child check-up with flying colors, his parents were thrilled. Probably even more thrilled than typical first-time toddler parents, because Nick’s life up to that point had been anything but typical.
Sophia
Sophia's Story Tetralogy of Fallot (TOF)
Sophia

Sophia's Story Tetralogy of Fallot (TOF)

During a routine 20-week prenatal ultrasound, Carol Kando-Pineda’s obstetrician in Fredericksburg, Virginia, spotted abnormalities in Carol’s unborn child that she referred to as “possibly inconsistent with life.”

Cuthbertson family strikes a pose
Heaven, Tiara and Messiah's Story Airway & Lungs
Heaven and Messiah hug

Heaven, Tiara and Messiah's Story Airway & Lungs

"My life has become better because I’m more educated and can help others,” Tiara Cuthbertson embraces being an asthma patient advocate.

Marc Levitt
Irina's Story Colorectal
Marc Levitt

Irina's Story Colorectal

When Irina and her husband first learned their infant daughter had a serious health condition, they immediately began researching the best doctors and surgeons to care for her. Read about Irina's story.