An 8-year-old Orlando boy is fighting a rare chronic disease that is the leading cause of kidney failure in children, but a new clinical trial could save his life.

Amaury Rosario loves playing with legos, but most of all he likes being outside and playing with his friends.

But for Amaury, everyday activities don’t come easy.

Amaury has Nephrotic Syndrome/FSGS, Focal Segmental Glomerulosclerosis—it’s a rare type of kidney disease, and he has already had a transplant.

“He might need another transplant… we don’t know. This illness is like a backstabber, one day he could be fine and one day he could not,” said his mother Ada Vazquez.

About five out of every 100,000 children are diagnosed with Nephrotic Syndrome in the United States every year. He is one of the few here in Central Florida.

“I think we would have been more depressed if we would have stayed and not done nothing and thought this is the end of the world,” said his father Billy Rosario. “We are very confident that he is going to be fine.”

Dr. Brenda Montane with Nemours Children Hospital has been treating Amaury ever since he was first diagnosed.  She says his journey hasn’t been easy.

One of the most dangerous symptoms of the syndrome is high levels of cholesterol. Dr. Montane decided to place Amaury on a clinical trial called Liposorber, which she says has been effective.

Liposorber removes bad cholesterol from the blood. Amaury has already done 12 weeks of the trial here in Florida and will continue with another round at Nemours’ sister hospital in Delaware.

“We are giving him the second chance to see if this time the remissions last longer, meaning the healing. And we are going for the best, for permanent healing,” said Dr. Montane.

This will be a new journey filled with hope for Amaury and his family.

If you would like information on how to help Amaury embark in his new journey to Delaware, click here.

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