Ella's Journey: Turning Challenges into Inspiration

Ella’s daily routine is quite different from most 20-year-olds. She relies on medical devices like feeding tubes and central line total parenteral nutrition (TPN), which supplies all essential nutrients directly into her bloodstream through a catheter. 

“I wake up at 6 a.m. to connect to my TPN and then go back to sleep for a little while,” she says. “Everything I do takes so much energy, so I have to move at a manageable pace."

Ella has postural orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (EDS). POTS is the most common autonomic nervous system disorder that affects teenagers and adults. POTS patients also often have EDS, which weakens collagen in the body and can cause loose joints and problems with the body’s automatic functions, like heart rate and blood pressure. POTS and EDS also cause a wide range of digestive issues that impact daily life.

Ella received pediatric care at Children’s National Hospital and recalls her time there as a positive, sometimes exciting experience. She says Children’s National still feels like home. 

“The whole hospital is just amazing,” she says. “The Child Life specialists would bring the therapy dogs to my room, and we would talk for hours. That really made every hospitalization fun. I even had a chance to meet the President and First Lady when they visited during the holidays!”

Ella is passionate about helping others with disabilities gain independence. She actively participates in service-dog training and studies business at Northern Virginia Community College. Her goal is to become an assistive technology professional. 

“I want to help develop assistive technology and devices that would be able to support people in their day-to-day life," she says. “I also spend my free time volunteering for a service dog organization. My dog, Atlas, has played a huge role in helping me maintain my independence, so I know how valuable they can be to patients."

Ella hopes to inspire others as they transition from pediatric care to adulthood and show that it’s still possible to lead a fulfilling life.

“I hope my unique experience helps benefit other people and encourages them to find strength in their own journeys,” she says. “I want others to see that, even when life is challenging, it’s possible to achieve independence and happiness with the right support and determination.”