Pleasanton graduate flourishes, surviving rare genetic disease

Roman Perkins of Pleasanton wasn't expected to survive.

He was born with a rare genetic disease 25 years ago, when KTVU first told his story.

But he has beaten the odds over and over again.

He has refused to allow physical limitations to stop him.

KTVU attended his high school graduation in 2017 and recently caught up with him as he graduated from college this month.

Roman and his father, Ron Perkins, shared their story of determination and their message to other families and people living with diabilities.   

"I want people to see me as someone who can accomplish anything," Roman Perkins said. 

It's a path that he has chosen despite being born with Hurler Syndrome. 

He's missing an important enzyme.

According to experts, many children with this condition die before they turn 10 years old. 

Roman is now 25.  

He not only beat the odds by surviving, he just reached a major milestone.

Roman graduated from Chapman University in Southern California with a bachelor's degree, where he majored in psychology and minored in entrepreneurship.

"I knew I would get emotional when he came across the stage," Ron Perkins said. "You always told us you could do it and he just proved it. It's a big deal."  

KTVU first told Roman's story in 1999, when he was only 10 months old. 

He had received a bone marrow transplant.

Roman's dad  recalled the emotions he had back then. 

"I didn't think he was going to make it."  

While the transplant saved Roman's life, it was not a cure.

He has problems seeing, hearing, talking and walking.

"I just faced it as a challenge, to find my own way to do better and overcome it," Roman Perkins said. 

Seven years ago, KTVU was there when Roman graduated from Foothill High School in Pleasanton.

Back then, he said he had difficulty making friends.

But his close relationship with his two brothers and father filled that void.

Roman also has a constant companion, his dog Levi.

Coping with physical and learning disabilities may be daunting for many, but not Roman.

"It would take him 2 to 3 times longer to do his assignments, but he would just sit there and go through it. He would advocate for himself," Ron Perkins said. 

Roman carried that determination throughout his quest to live life to the fullest.

Dad gifted him a vehicle.

Roman got his driver's license.

But he stopped driving alone after he suffered a grand mal seizure.

He hoped to resume driving regularly when it's safe. 

While attending college, he underwent surgery for a cornea transplant when his eyesight deteriorated.

"It became such a challenge in class to see what my teachers are writing on the board to take proper notes," said Roman.  

He got a job working as a barista during college.

But that didn't come easy.

Roman said he was rejected repeatedly by several large retailers when he applied for jobs.

He was eventually hired to work part-time by Chase Coffee Roasters in Orange County, which specifically employs people with disabilities.

"I finally get to build social skills with people and interact with the customers, and I get to learn how others work as well," said Roman.  

He still has to undergo another cornea transplant.

But in his usual fashion, Roman planned to apply for internships that would hopefully lead to a full-time job.  

His next goal is to become financially independent. 

"I can't explain how Roman does it. I'm sure he's going to find a job somewhere, some how, some way," Roman Perkins said. 

Roman gets his exercise by training in mixed martial arts three times a week.

Physical limitations do not stop him from snowboarding or zip-lining.

He has risen to meet every hurdle, sometimes with help,

When he was asked what he's most grateful for, Roman replied: "I'm most grateful to my family for always being there if I need some sort of support. I just reach out to them, and they're right there. I'm always going to stumble upon a rough patch."

"He's everybody's purpose, including my own. I don't know what I'd do without him," Ron Perkins said. 

The name Roman means strength and power.  

"He's given me strength when I didn't have any.  He means everything,"  his father said. 

Amber Lee is a reporter with KTVU. Email Amber at or text/leave message at 510-599-3922. Follow her on Facebook @AmberKTVU,  Instagram @AmberKTVU  or Twitter @AmberKTVU.