A day in the life of a man with brittle bone disease

For 19-year-old computer programmer Fredrick Brennan, leaving his Brooklyn apartment is a huge hassle and a big risk

As part of our “Overcoming Disability” series, America Tonight spent a day in January in the life of Fredrick Brennan, who works two jobs, lives independently and has brittle bone disease.

BROOKLYN, N.Y. – Fredrick Brennan, 19, has broken a bone around 120 times in his life, but he’s stopped keeping an exact count.

The computer programmer has osteogenesis imperfecta – a bone condition commonly known as brittle bone disease. He’s somewhere in the middle of the severity spectrum.

"There's more severe cases where you actually die, and then there's like a bit less severe where you're OK but you can't do anything for yourself, you need constant attention because even trying to get out of bed will cause you to break a bone," he explained.

Brennan constantly uses mechanical reacher arms for tasks like turning on the water or getting food out of cabinets.

"I have very short arms. I can't really reach down and pick things off the floor when they fall. I can't really reach up and get things out of the cupboard," he said.

But he added his reacher arms break about once a month.

"They just don't last. I don't think that they're built for my kind of use case."

Even with reacher arms, making food can be especially difficult.

"Cooking is not really safe for me because a pan of boiling water is about as big as I am, so I have to be really careful when I'm cooking not to spill it on myself," he said. As a result, he said, "I eat the most unhealthy diet. It's really bad. I wish I had an aide."

In order to afford the things that could make his life easier – like an aid to assist him or an electric wheelchair – Brennan works two jobs from his apartment as a computer programmer.

When he got his first computer at the age of 6, he was hooked immediately.

"When I was a kid, there wasn't a whole lot I could do, like kid activities. … I could read, I could watch television or I could go on the computer," he explained. "Behind the keyboard, it doesn't matter that physically my body doesn't work properly."

"When I was 13, I wrote my first computer program by myself. Naturally, I moved on to Web design and things like that."

Brennan is the lead programmer at a company that makes Web-marketing projects for small businesses. He started working there part-time, but his boss, Aaron Parnes, wanted to change that.

"I was talking with Frederick last summer about him giving me more time, and I offered him the opportunity of moving from Atlantic City into his own apartment in New York City," Parnes recalled. "He jumped at that idea and said, yeah, if I'd be able to arrange that he'd be able to come work for me full time."

Parnes pays the $1,300 rent for Brennan's apartment each month. His other job with a company in Canada helps him cover other expenses.

"They pay me $1,030 per month, $30 of which is PayPal fees and 15 percent of which goes to taxes," said Brennan.

After taxes, he has about $800 a month to cover his other expenses. He's trying to save up any extra income in order to buy an electric wheelchair. The one he's using sometimes stops abruptly, so getting around without one is one of his biggest challenges.

Running errands, for example stopping by a medical supply store to get his wheelchair fixed, can be a big production. Just leaving his apartment poses serious risks, given his bone condition.

"The super of this building did something very annoying. He put a weight on this door… so this door is now heavier than ever before," Brennan said. "Like I swear they try to make it harder for me sometimes."

Above, Brennan attaches a rope to the doorknob from his wheelchair to help him open it. But as he does, his phone rings.

"Oh, Access-A-Ride is calling me. They're probably out here. Son of a bitch," he said. "Yeah, we're 3 minutes late. We probably missed them."

Brennan needs wheelchair accessible transportation to travel, but it's not easy to arrange.

"With Access-A-Ride you need to book it 24 hours in advance," he explained.  "You have to be here whatever the weather, whatever's going on and it's up to you to find the driver’s van ... If you miss three trips in a month period, they actually suspend your service."

For Brennan, the strict penalties don't add up.

 "This service is actually for people with disabilities, so you would think they would be a little more understanding, they would call you on your phone and they would try to like make sure you get on your van if possible."

On days when he can't take Access-A-Ride, Brennan has to use the subway. But when there's too much snow, that becomes impossible, and the expensive taxi rides add up. 

Even so, Brennan is grateful.

"I actually think in comparison other people that work and are in poverty, I'm lucky in that I do get some support from the government and I do have money left over at the end of the month," he said. "I know lots of people like that who are in debt who have to choose between the bills that they pay."

And he has hope.

"My goal would be to do things like travel. I do like to travel. I want to develop the projects that I have. Other disabled people, they don't have the skill that I have with the computer. Everybody is the same behind the keyboard."

More from America Tonight

Related News

Find Al Jazeera America on your TV

Get email updates from Al Jazeera America

Sign up for our weekly newsletter


Get email updates from Al Jazeera America

Sign up for our weekly newsletter