PORTSMOUTH — Dan McCarty has fractured more than 350 bones in his 10 years. But his zest for life — and empathy for others — will never be shattered. A parable in 12 parts.
1. When people first meet 10-year-old Dan McCarty, they’re often startled by his appearance. Some look away, but others — usually younger kids — will go right up to him and just say stuff.
“To be truthful, I get: ‘You look weird,’ ” says Dan. “‘Why is your face so big?’ or ‘Why are your ears like that?’ or ‘Why are your bones like that?’ or ‘Why are your arms different?’ But I really don’t care. I just explain.”
2. Osteogenesis Imperfecta Type III (os’tē-ō-jen’ĕ-sis im’pĕr-fek’tă) is a severe form of Brittle Bone Disease, a genetic disorder in which a person is born with defective connective tissue — or without the ability to make it — usually because of a deficiency of collagen. Babies are often born with broken bones — many of Dan’s were fractured during birth, including eight of his ribs — and a person with the disease will be small in size, have bent and short limbs, spinal curvature, a triangular face and potential respiratory problems. They also need adaptive equipment, such as the special wheelchair that Dan uses.
3. “For all I know I’ve broken over 350 bones by now,” says Dan. “I get treatments, like IVs every couple of years to get my bones stronger. But to tell you the truth, I don’t think it makes a difference because I break the same amount of bones like every year. It kinda hurts, but I really got used to it. I know it’s what my body’s going to do and I can’t change it. I have two bones broken up here that we just found out about (he points to one of his legs that was recently X-rayed). They’re healing up. If I’m feeling sore, or tired, I’ll just rest, play XBox (‘MLB 2013’ is his current favorite) or something.”
4. Sometimes Dan never knows when a break will come.
“One of my friends actually sat on me, and this kid’s about 125 pounds; he’s a big kid,” he says.
But nothing broke.
“It’s just a pulled muscle. It’s kind of funny because it’s lighter things that usually break me. It’s really weird. I fell out of my wheelchair once when I was in second grade. I went to put on my brakes and I did a front flip onto the ground, and it didn’t break anything. But if someone drops a camera on me, I break my leg.”
Dan loves playing catch — or anything having to do with a ball — but he needs to be careful.
“As long as it’s not a hard ball and as long as you don’t throw it really hard, it’s fine. A lot of my friends usually get it after I show them,” says Dan, adding that it sometimes bothers him when people think he’s too fragile.
“Sometimes when my mom’s around my friends, she’s like, ‘Be careful!’ My aides at my other school, they’d always be like, ‘Don’t touch him!’ when I gave my friends high-fives.
“I don’t care that my bone’s broken. I care about the other people — how they feel. It’s worse than the pain. I feel so bad for them. It happens. I get used to it — ‘Don’t worry about it. Let’s play.’ ”
5. In addition to having to be cautious while playing, Dan’s breathing must be monitored constantly.
“They call it restrictive lung disease because your lungs continue to grow but your body doesn’t continue to grow, so it makes it harder for you to take deep breaths,” says Nicole McCarty, Dan’s mom.
Dan has breathing treatments whenever he needs them — which could be in the middle of the night — and he takes medicine three times a day. Dan also has less resistance to infection than other kids, so he gets sick more often.
“I had croup, then I had the flu, then I had the flu again and I just got over pneumonia,” he says. “When I’m around people who are sick, I can catch it like that.”
6. Dan’s a sports nut, especially when it comes to baseball and basketball. The lifelong Red Sox fan threw out the first pitch for Portsmouth Little League’s opening day last year, but it’s been hard to find a team on which to play. He played in the younger division of the Portsmouth Challenger baseball team last year, but didn’t find it challenging enough. He doesn’t feel he can play with the older team, however.
“They actually use real baseballs, so if I got hit by one it would break my arm,” he says, adding that the local unified teams also use balls that could hurt him.
Dan is always around a ball field, however, as he roots on his 12-year-old brother, Grant, who plays on a travel baseball team. (He has four other siblings: Matthew, 20, a student at UMass-Amherst; Kim, 19, who attends Western Oregon University; Megan, 17; and Claire, 14.)
“I’m always going where (Grant’s) going because I really like to watch baseball. You’ll see me cheering a lot. I’m friends with everybody on the team. Sometimes I do the announcing.”
7. Dan’s met many different people during his travels. Born at Women & Infants’ Hospital in Providence, he lived in Bristol, Somerset, Kentucky and Las Vegas (twice) before moving to Portsmouth last spring. “We’ve moved around because of my dad’s job. The job that he’s in now is Philips Lighting. His headquarters is out here and he’s one of the top five people in his company.”
While in Nevada, Ms. McCarty worked for Best Buddies. “It’s a nonprofit organization that matches people with disabilities with people who don’t have disabilities so they can go around and do fun things,” says Dan, who met professional bowler Sean Rash through Best Buddies in 2011 in Las Vegas. “(Bowling) sometimes doesn’t catch my attention, but when I met Sean I was like, ‘Oh, this is pretty fun.’ ”
Best Buddies also made it possible for Dan, when he was 8 and living in Kentucky, to write and perform a song with Miss Kentucky, Kia Hampton.
Although Nevada has been his favorite place to live so far — “Nice weather and I like to swim” — Dan has great things to say about Portsmouth.
“Sometimes it’s a little chilly, but we can work around that. The people are really nice and I’ve met some awesome friends at my school. I really enjoy being at the middle school. It’s a really great experience,” says Dan, who’s in fourth grade but also has friends in grades 7 and 8 because he’s so mature for his age.
“What’s so amazing about Portsmouth is that with the culture of the community, Dan’s not considered different,” says Ms. McCarty.
8. As he does whenever he meets new kids who are curious about him, Dan talked openly about his disease after arriving in Portsmouth.
“He sat with those kids and he told them about himself and what it’s like to be him,” says Kelly Goss, Dan’s fourth-grade teacher. “He says, ‘My legs don’t work, but I can think, I can speak, I can learn.’ Once kids find out that commonality, they just flourish.”
“I lot of people think that since I have my disease … that your life is over because I look like this,” says Dan, adding that he “had like 20 friends” within two weeks of arriving in Portsmouth. “But to me, I just enjoy doing a lot of things that other kids like to do. I love talking, I like to learn.”
When Dan was out sick for three weeks this year, his classmates started pestering Ms. Goss to find out if he was OK. “They started to worry. They want him around,” she says. “Everybody wants to be with Dan. I don’t really think they see the (wheel)chair. I see him playing catch with the kids on the recess field. They try to include him as much as they can. They’ve kind of taken him under their wing. When I’m taking attendance, they help him get settled in. They rally behind him. He leads us. When we line up and go someplace, we’re always behind Dan.”
9. Although Dan keeps a positive outlook, he gets down like everyone else.
“I’ve had a couple of bad days this year. Sometimes I didn’t know the answers that I should have. My brain’s not there today — hollow. You know what I mean? And sometimes I feel achy and I don’t want to move. There’s a lot of things that can go wrong. But I just play through it.”
10. Although his mom says he’d make a great sports announcer or umpire — “He has an amazing eye,” she says — Dan has loftier ambitions.
“I actually want to be a scientist when I grow up,” says Dan. “I want to be able to make cures for diseases — like mine — and AIDS and Alzheimer’s. People who have tubes and stuff … I just want to make them feel like what it’s like to be a kid. I feel bad because some people are slower than others. I just want them to feel like they’re not left out. I think that’s what God sent me here to do. I want to be able to learn everything I can so I can do what I want to do when I grow up and not to be one of those people who don’t try.”
11. “He lives his life that way every day,” says Ms. Goss. “If he can help someone out, he will. I know it’s my job to teach him, but he has taught me so much about life in general. Sometimes you get up and you’re tired and you don’t want to go to work. But when you look at Dan with that big smile, and you think about what he goes through on a day-to-day basis, he just puts a hop in your step.”
12. Ms. McCarty says many people look at her son as some sort of “superhero,” simply because he’s living his life the best he knows how. Although Dan has a lifelong illness, he doesn’t dwell on it. He and mom talk a lot about the importance of being empathetic to others.
“Something we talk about is that everybody has their own issues and sometimes we don’t see what hurts in them,” she says. “We really don’t know what they’re going through, so we need to be sensitive to them. Just because people can see that you look different and that you experience pain, doesn’t mean that a lot of other people aren’t hurting, too.”
Sometimes, Dan says the attention he gets can be a bit much.
“It’s just kind of funny. We had a school pep rally for the basketball team. I thought everyone would be cheering on the team because they just won the state championship. Then when I walked in they were all like, ‘Dan, Dan, Dan!’ They weren’t even paying attention to the team! It’s really interesting sometimes. But sometimes it’s pretty cool, too.”
Dan understands he has a responsibility to speak up for other kids with disabilities — children who may not be as articulate as him.
“I really enjoyed it when my mom did work for Best Buddies,” says Dan. “I really liked putting those special words in other people. I really think they need to be helped out. Sometimes you need to go out of your bubble. Sometimes you have to go out of your way to do things for your community, your state, your town. You’re not always in your one path. Step out of that path; go to a baseball field to help out.
“Just because you have a disability or you look different, doesn’t stop you from being able to do stuff with other people.”
Postscript: The McCartys’ stay in Portsmouth will be a brief one, as the family is moving back to Las Vegas in June. After discussions with Dan’s doctors and family members, it was recently decided that he needed to get back to a dry climate to help with his breathing. Ms. McCarty says the family is sad to be leaving Portsmouth, but knows it’s the best thing for Dan.