Perfect 10: North Providence athlete pushes for change in law in brother's name - Turn to 10

Until last year, doctors could use a Rhode Islander’s disability to deny them an organ transplant.

“They could have been discriminated against and denied an organ transplant just because they have a disability,” said Nico Upegui, a junior on the North Providence Unified Basketball team. “It was really shocking, and just outrageous to me.”

Nico, inspired by his older brother, Isaac, would look to change that, taking steps to enact a law that would prohibit discrimination against potential organ transplants based solely on disability.

“My brother has Down syndrome,” said Nico. “He actually had open heart surgery when he was very young. That really impacted me because I thought if he ever needed a heart, for example, or any organ in the future it could be denied to him because he had Down syndrome. That was a very scary thought to me.”

The brothers, one year apart, play together on the North Providence Unified Basketball team. However, their bond goes beyond the court.

“I love him very much,” said Isaac Upegui, a senior at North Providence.

“We are super close, super close,” said Nico. “We probably tell each other that we love each other like 20 times a day. That’s the first thing he says to me every day. I couldn’t have a better brother. I have the best brother in the world.”

Nico’s advocacy started by signing up for emails from the National Down Syndrome Society, but it would soon turn into much more.

“At first I was not sure how much change I could actually create,” said Nico. “The worst thing you could do is do nothing.”

Despite his soft-spoken nature, Nico would demand change and craft "Isaacs Law" to ban discrimination against organ recipients based on a disability.

“He’s very humble, so we don’t hear a lot of outwardly spoken words from him, but when and what he does say is what makes the difference,” said Stacy Pokora, North Providence Unified Basketball head coach. “He has a big, big heart and I’m just happy to know him. I’m happy he goes to this high school. He is an advocate for not only his brother, but for many people in the community who may not have known that this is something that took away from people with disabilities.”

“It was taken up quickly by a lot of the other legislators because they knew that this was necessary this is very clearly a bill that needed to be passed,” said Nico.

In July 2021, the bill named after his older brother was signed into law.

“Individuals with disabilities have already gone through and overcome so much in their lives and for them to be denied a possibly life-saving organ transplant due to their disability is simply wrong and this practice must be rectified,” said Nico’s cousin, Sen. Jonathon Acosta, D-Central Falls. “The stigma and prejudices experienced by people with disabilities is real and denying someone vital medical care because of these biases is perhaps this unfair treatment’s most repugnant form. This bill will save lives.”

“I would have never thought in high school at 16 years old, I could make such a huge change,” said Nico.

source: https://turnto10.com/sports/perfect-10/north-providence-rhode-island-unified-basketball-team-nondiscrimination-transplant-disability-isaacs-law

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