SACRAMENTO, Calif. (KTXL) — A Sacramento boy facing a rare disease is not going to let that stop him from living his life.

In fact, his family is so determined to give him a good life they’ve created a nonprofit in hopes of finding a cure one day. Aarav Khalasi, a 7-year-old boy, is a student at NP3 Elementary and he said he loves school.

He loves it so much he’s actually sad summer break is just around the corner. Even through all of the struggles with the disease, his parents told FOX40 he’s a fighter.

“To this day, every night, my husband wakes up at 4 a.m. because he has to give him his meds,” said Minaxi Khalasi, the boy’s mother.

At just 1 year old, Aarav was diagnosed with a rare disease that was a complete shock to his parents, Minaxi and Mukund Khalasi.

“Cystinosis causes crystals to build up and those crystals essentially will slowly harm the organs, especially the kidneys and the eyes,” Minaxi Khalasi said.

And then a couple of years later, there was another blow to the family.

“His skull was already fused. It wasn’t growing anymore. His brain needed to grow, but his skull was not allowing it to grow,” Mukund Khalasi said. 

His parents quickly worked to find their new “normal” routine and that included starting a nonprofit. Aarav’s Time to Shine aims to raise money for the cystinosis research foundation.

“They deserve the proper research and resources to them to make their lives a little bit easier,” Minaxi Khalasi said.

“One of Aarav’s favorite things to do is to shoot some hoops inside his house, but recently, his play area has been occupied by gifts and things for a very important event this weekend.

“We have our first golf tournament. We sold out within two weeks of us posting the event,” Mukund Khalasi said. 

The family has raised $13,000 so far from this golf tournament to go towards research.

In the meantime, for anyone waiting on a cure, Aarav has some words for them.

“I hope their cystinosis is gonna be gone,” Aarav said.

Even though the event is sold out, people can still donate to the family’s nonprofit. To donate, visit