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America Tonight Mon-Fri 9:30pm ET/6:30pm PT

A day in the life: Living with brittle bone disease

by The America Tonight Digital Team September 12, 2014 5:30PM ET

Fredrick Brennan lives by himself, works two jobs and still struggles to get by

Topics:
Disabled
Health
Disability Benefits
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Getting out of bed
"It's fortunate because a lot of people with my condition can't get out of bed; they can't use the toilet or take a shower by themselves ... I've broken my bones 120 times in my life. That's just an estimate. Most of my breaks were when I was a little kid – doing normal stuff."
Brushing his teeth
Brennan constantly uses reacher arms for tasks like turning on the water or getting food out of cabinets.
Dangers in the kitchen
"I spend a lot of time doing somewhat dangerous things. 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. I eat the most unhealthy diet. It's really bad. I wish I had an aide."
Using his computer
"When I was a kid, there wasn't a whole lot I could do, like kid activities. I had a couple choices as far as entertainment goes. I could read, I could watch television or I could you know, go on the computer."
How he got his start in computers
"I first got my first computer when I was 6. And I got my next computer a couple years later, which I had just for me. It was like an old desktop computer. And I literally sat at that machine all the time. When I was 13, I wrote my first computer program by myself. Naturally, I moved on to Web design and things like that."
His boss arrives
Brennan’s boss, Aaron Parnes, who runs a small online marketing company, drops by his apartment to talk about their current projects. "Frederick is our lead programmer. I was talking with Frederick last summer about him giving me more hours, giving me more time and I offered him the opportunity of moving from Atlantic City into his own apartment in New York City … 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."
Sharing a laugh
"Working with Frederick has been such a different experience … The fact that he's disabled makes him even a better worker [they both laugh] because he's not running away doing lord-knows-what. He's dedicated ... I know I could always find him here … He'll work sometimes 12 hours a day. He even told me once he stayed up all night working on a project." Before leaving, Parnes asks if Brennan needs anything. "Nope, I pretty much have everything,” he replies. "I had groceries delivered yesterday."
Sitting in his apartment
"Behind the keyboard, it doesn't matter that physically my body doesn't work properly. Everybody is the same behind the keyboard as long as you can use the keyboard… I work two jobs. One job is with my boss Aaron. Aaron pays for the rent here – that's $1,300 per month. I don't ever see that money because he's the tenant here, so he just pays for the rent. And one job is for a company in Canada … they pay me $1,030 per month, $30 of which is PayPal fees and 15 percent of which goes to taxes."
Arranging transportation
Running errands is a big production for Brennan, especially arranging accessible transportation and dealing with the weather. Leaving his apartment is a huge hassle and a big risk, given his bone condition. "With Access-A-Ride you need to book it 24 hours in advance so the only way I can get into [New York] City is to try to ride the subway out in the cold, but there's too much snow so that's not going to happen. So I'm going to be booking that for tomorrow."
Leaving the house
Going into Manhattan is a quite a challenge using his wheelchair. "We're going to run some errands and stop by a medical supply store. I need my wheelchair joystick fixed. It was really loose. I really need to replace the reachers that I have. One of them is bent, one of them the magnet is missing. 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 ... I use them all the time."
Struggling with a weighted door
"The super of this building did something very annoying. He put a weight on this door. Like I swear they try to make it harder for me sometimes. So this door is now heavier than ever before," Brennan explains. Here, he attaches a rope to the doorknob from his wheelchair to help him open it. As he struggles to open the door, his phone rings. "Oh, Access-A-Ride is calling me. They're probably out here. Son of a bitch. Yeah, we're 3 minutes late. We probably missed them."
Finding the van
"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."
Wheelchair slips in snow getting on bus
"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 make sure you get on your van if possible."
On New York City sidewalk
"I was saving up all my extra income for two years to try and buy a new wheelchair that would be better for me. This one has an electrical problem, like sometimes it will stop and not go anymore." He needs about $5,000, and had almost saved up enough in January. But then an acquaintance took some money from him, so Brennan withdrew all the cash, only to be robbed soon after in at the Port Authority. Update: From contributions to a special fund, he acquired a new electric wheelchair.
Helped into restaurant
"One. Two. Three. Up!" say restaurant workers as they help Brennan inside over a threshold.
Reacher arms don't last
"I break about one of these a month," Brennan says of metal reacher arms. "They just don't last. I don't think that they're built for my kind of use case." After taxes, he has about $800 a month to cover expenses like these.
Joystick fixed
"Well, the bracket’s bent, and I think that's causing the screw to get stripped because it's not going through the threading properly," a technician tells Brennan while fixing his wheelchair’s loose joystick. "Hopefully, this chair will be donated pretty soon."
Waiting for taxi
With the sidewalks lined with snow, Brennan orders a disabled-accessible cab to drive him the couple blocks to where Access-A-Ride would pick up. But the cab is running over an hour late. "So I missed Access-A-Ride. I've been penalized for that because I wasn't at the stop where they would pick me up at the right time so now we’re waiting, hopefully, for the cab to come."
Taxi finally arrives
So, when the cab does come, Brennan takes it all the way back to Brooklyn. "This is why I usually don't come out to the city because I just have tons of problems whenever I do. Some things that for most people [are] completely normal, it's actually pretty risky for me to leave the apartment, so I usually don't."
Taxi meter
In addition to the penalty for missing his Access-A-Ride, Brennan’s cab fare is over $50. "I actually think in comparison to people, like 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 … Most people, they don't have the luxury of even having $20 per day left over … I know lots of people like that who are in debt who have to choose between the bills that they pay."
Back in bed
"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."

Watch parts one and two of America Tonight's profile.

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 said.

Brennan struggles to get by, both financially and with basic tasks. As part of our “Overcoming Disability” series, we spend a day in the life of Brennan, as he lives independently, works two jobs from his apartment and saves up – as he has for two years – for a new electric wheelchair.

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