Meet Aaron: a genetic disorder meant a lot of hospital trips

Children’s Health℠ made the trips less scary.  

Growing up, Aaron, 15, spent a lot of time in hospitals. His diagnosis remained a mystery to his family for years, until one doctor found he had been born with Alagille syndrome.  

This meant he had a genetic disorder that made it hard for his liver to pass bile — a substance that helps the body digest food and process waste — to the small intestine. 

Aaron’s liver struggled to store and release vitamins and minerals essential to the rest of his body. His bones became so brittle, he broke his legs at least six times. His teeth had dark stains, and blood would often gush out of his ears or nose. 

Because Alagille syndrome can affect the heart, where issues range from a murmur to structural defects, physicians performed a minor surgery on Aaron’s own ahead of his liver transplant. He was only 4 years old and had already spent more time in hospitals than many adults. 

But it hasn’t always been scary. 

A few years after Aaron’s family moved to Texas and transferred his care to Children’s Health℠, he experienced a transplant rejection episode that led to a 10-day-long hospital stay. During a separate trip to the emergency room, physicians treated him for a mixed case of pneumonia, RSV and Covid. 

His parents’ anxieties spiked, but witnessing the care and attention Aaron received during each visit and stay gave them peace of mind.  

 “The doctors, the nurses, everybody would come in and make it all about Aaron, making him feel comfortable. They were so kind to him,” said Yadira, his mom. “Children’s Health has been so good to us and our son.” 

Aware of his medical history, Children’s Health team members reached out afterward to the family to check in on them and Aaron, reminding them of the hospital’s mental health offerings.  

“It's natural for kids to be scared,” Yadira said. “But I think that's what Children’s Health has done. Aaron’s not afraid to go to the hospital. That didn't start until we got to Dallas.” 

Aaron’s family has experienced firsthand how physicians, nurses and child life specialists at Children’s Health are willing to go above and beyond. 

They’ve joined his family in prayer to comfort Aaron when he struggled to breathe while fighting pneumonia; helped entertain him with LEGOs and video games when his parents needed rest; and made the whole family feel taken care of. 

They’ve also observed the impact donors have on the lives of patients like Aaron when they contribute to Children’s Health.  

“A lot of the times, you donate, and you don't really know how much of what is gifted actually makes it back into patient care,” Yadira said. “Here, we’ve experienced it.” 

Philanthropic support makes the impossible possible for the hospital’s young patients. This kind of unrestricted support allows Children’s Health to fund areas of greatest need and impact to enhance critical programs. Donations pioneer research and breakthroughs in liver disease for teens like Aaron. And they help expand hospital facilities and access to health care for a growing North Texas pediatric population.  

“Things like that really matter,” Yadira said. “Children’s Health team members are so kind and loving to these kids. This place doesn't seem like a hospital to them. All of these things make a difference.” 

Today, Aaron devotes his time to working out or hatching new businesses with his brothers, such as the trash bin cleaning venture they began last summer. He runs, plays soccer, boxes and lifts weights to get his body back into shape after the toll treatment has had on him. 

“He's very strong. He's very dedicated,” said Anthony, his dad. “If he's determined to do something, he's going to do it. That's the kind of person he is.” 

Meet more Children's Health patients

Read more patient stories like Aaron's and meet our Patient Ambassadors to learn how Children's Health makes life better for children.

How you can help

Help kids like Aaron by exploring our ways to give or by giving today!