CHARLOTTE, N.C. (FOX 46 CHARLOTTE) - There is one patient at Levine Children’s Hospital who is enrolled in a clinical trial and he’s happy to be a part of it.
Ben Aguallo was diagnosed with Atypical Hemolytic Uremic Syndrome when he was six years old. He’s spent most of his life in and out of clinics. While his treatment regimen has improved over the years there is always room for improvement.
“I used to have treatments every two weeks,” said Ben Aguallo, a student at Mallard Creek High School. Now, thanks to this clinical trial, he gets medicine every eight weeks. Aguallo is one of 30 patients worldwide taking part in the study and the only one in the Charlotte area.
“Very early on we realized that Ben understood the seriousness,” said Jonathan Aguallo, Ben’s dad.
“It’s a very rare disease in children,” explained Dr. Jack Weaver, Ben’s pediatric Nephrologist at Levine Children’s. Weaver says he has only five patients with this disease and Ben is one of them.
Ben, 15, made the decision to enroll in the trial. One that his family says is important and they are proud of.
“By doing this I’m helping other people by going through this trial it is giving research to the hospital to they can help people in the future,” said Ben.
“To understand the disease better and the drugs that need to evolve we just felt like it was important to be a part of,” said Ben’s dad.
His visits have the potential to help future patients and the hospital staff that have come to feel like family. The drug being tested is a re-formulated version of a FDA approved drug.
“I want Ben to have the life he wants. Yes, he has this disease but we can treat it now,” explained Dr. Weaver.
Hollister Dibble is the clinical research nurse over the trial. She sees Ben for bloodwork and closely monitors how he is doing.
“I hope the trial improves the quality of his life so he doesn’t have to be tied to Charlotte and this hospital,” said Dibble.
Ben doesn’t miss a beat even with his disease. He loves soccer, spending time with his friends and is even a member of the JROTC.
“I feel like a completely normal teenager,” said Ben.
Ben’s dream is to become a history professor. Through this trial he’s already making medical history.
The trial runs until 2021.