In many ways, Eriel Acosta, 15, is a typical teenager. He loves Marvel movies, spending time with his friends and playing basketball, video games and Monopoly. His favorite class in school is photography. The calm, mature teenager says he’s “friends with everybody” and his mom, Beatriz, is proud of how well he does in school.
But life hasn’t been easy for Eriel. When he was two years old, he was diagnosed with nephrotic syndrome, a condition where his kidneys don’t function properly. Nephrotic syndrome can cause symptoms like weight gain from excess fluid in the body, low protein levels in the blood, high cholesterol, swelling in the ankles, in the legs and around the eyes, and high blood pressure. Long-term, it can lead to kidney failure, which requires treatment like dialysis or kidney transplantation.
“Eriel’s prognosis is guarded to the extent that one day, we would expect he will slowly lose kidney function, but it has been remarkable that, to date, he still has normal kidney function,” says Dr. Charles McKay, a pediatric nephrologist at Levine Children’s.
Eriel’s Journey with Nephrotic Syndrome
“Since we first started to see Eriel in 2011, we have used the spectrum of available agents to try to control his disease, minimize side effects and preserve his kidney function,” says McKay.
But despite all available treatments, nephrotic syndrome is a lifelong condition that often causes other complications.
Eriel has been hospitalized numerous times, with some stays as long as a month. He’s even temporarily undergone dialysis. His most recent hospitalization required a stay in the pediatric intensive care unit (PICU).
“His [hospital] admissions are mostly for edema from his nephrotic syndrome, but he did develop a flash pulmonary edema [excess fluid on the lungs], requiring him to be in the pediatric intensive care unit on a ventilator,” says McKay. “Eriel went into kidney failure but has recovered.”
As one might expect from a teenager, Eriel doesn’t love being in the hospital, but says he does find joy in the game room, drawing and doing puzzles. He also fondly recalls memories of having races down the hall with his nurses where he, of course, wins every time.
Fortunately, he has responded well to his medications and has avoided the hospital for over a year. He sees his Levine Children’s team, including McKay, for regular checkups and medical care.
“Dr. McKay is so cool,” says Eriel. Beatriz adds, “We love him.”
The Levine Children’s team also includes nephrotic syndrome expert and researcher Dr. Susan Massengill. The department participates in research and clinical trials to better understand and treat nephrotic syndrome.
“There is reason to hope that we are finally making progress in better understanding Eriel’s disease and the conditions of other children like him,” says McKay. “We have hope that we may see more targeted therapies in the future.”
Eriel and his family have benefited from the team of doctors, nurses, dietitians and social workers who have supported him along his journey.
“I appreciate his care team so much,” adds Beatriz. “They always answer quickly when I send them a message. They’re always excited to see him.”
Eriel’s Dreams for the Future
Eriel’s high school has a great football program and he plans to try out for the team next year.
While photography is currently his favorite subject in school, he’s interested in becoming a psychiatrist in the future. That career path couldn’t be more fitting as the teen has a comforting, caring presence. Eriel’s dad, Santiago, even calls him by the nickname “oso,” which is Spanish for “bear” since he is everyone’s teddy bear.
His family’s hope for him is to get better and have good health.
“Seeing how strong he is and how well he deals with the situation gives me hope,” says Beatriz. “He does such a good job and does well in school. He’s always smiling and being positive.”
Eriel has been through many ups and downs in his life because of his kidney condition, but he always radiates positivity. When asked what he would say to other kids in similar situations, he says, "Keep going. It will get better.”
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