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Kids find happiness, friendships in a common bond

New Hampshire Union Leader

March 02. 2013 10:58PM

Carter Mead, 7, of Manchester talks during an interview at Next Step Orthotics & Prosthetics in Manchester. (Thomas Roy/Union Leader)

MANCHESTER -- A combination of titanium and plastic, tricked out with flames, the device attached just below Carter Mead's left knee can act like a lightning rod for emotions.

From curiosity to cruelty, fear to fascination, it has prompted a wide range of reactions from people the 7-year-old has encountered.

There's only one emotion Carter feels for it.

"It's my leg, and I love it," said Carter, of Manchester.

Carter is part of a group of children, all congenital amputees, who have developed a close and special friendship through their association with Next Step Orthotics & Prosthetics Inc., headquartered in the Manchester Millyard, 155 Dow St.

Strangers a year ago, the 12 youngsters, from 6 to 12 years old, have become playmates and pals, sharing a bond most people will never experience - the absence of a limb.

A reporter visited with some of the children last month at Next Step.

"A group like this, it helps the kids realize how special they are," said Matt Albuquerque, the founder and president of Next Step, which also has offices in Massachusetts and Rhode Island. "They are the most vulnerable part of our population, and it's an honor to work with them and help them achieve their goals and dreams. They are inspirations to each of us."

The goals of Next Step's youngest clients may sound simple. Heidi Carlson of Concord said her daughter Julia wanted only to carry a lunch tray in the cafeteria at the Mill Brook School and pull herself up onto the seat of a swing at a playground - tasks that might be difficult for someone born without a left arm below the elbow.

Mission accomplished.

"It was awesome," said Julia, 6. "Next Step is the bestest. They showed me tricks how to do things."

Julia was fitted with an arm prosthesis, colored pink and decorated with stars and smiling cartoon animals. Thanks to a pulley system with slings behind her back, by moving her right arm, she can open the hand on her left prosthesis; relaxing the right arm closes it. She demonstrates by shaking a reporter's hand.

"It's really easy," said Julia.

"Kids acclimate much quicker than adults because there's no preconceived notion of how it's supposed to be," said Albuquerque. "The kids here, this is all they know. They have lived without a limb. You give them the ability to run around the playground, run with their friends: That's what they're looking for."

When Charlie Smith was born, his right leg ended just below his knee and he had a small left hand. The 10-year-old's family moved to Nashua six years ago from a community in New Jersey across the Hudson River from where the World Trade Center towers stood.

"I was pregnant with Charlie on 9/11," said Mary Smith. "The doctors said the amputation he was born with are probably connected to the smoke that was blowing from the site. There were six kids born with similar conditions around us."

"Charlie didn't run," said Smith. "He didn't want to run. He came here, met the other kids, and he started running. Now he wants to. It's been so good for him to see what other kids can do. It pushes him in a good way."

Qamar Mohammedhasan, 10, moved to Manchester five years ago from Iraq. She was born missing her right leg below the knee.

"I couldn't play with any other kids in my old country," said Mohammedhasan. "I used to sit on the stairs and watch the other kids play. I couldn't do anything. My brace was different there. I could only crawl, I couldn't walk. When I came here and got this brace, I could walk and crawl and run and swim, too. Swimming is my favorite thing to do."

Cost of prosthetics

How much does an arm and a leg cost? According to the Limb Loss Resource Center, an amputee coalition based in Virginia, a prosthetic arm can generally cost about $3,000, a prosthetic leg about $5,000.

"The average prosthesis lasts about two to three years," said Albuquerque. "They're replaced when the kids have grown out of them or when they break.

A congenital amputee's individual characteristics determine the materials and technology used in each prosthetic. A device can be powered by the person's body or computerized. It can be made of aluminum, stainless steel, titanium, carbon composites or plastics.

Because a prosthesis is composed of moving parts, pieces of the device can wear down and require replacement. As the individual ages or grows, gains or loses weight, the device will often be replaced.

"One thing a good prosthesis does is allow kids to be active and exercise," said Albuquerque. "We always tell insurance companies it's not just about the leg, but about the better lifestyle that goes along with it. The better care they get, the healthier they will be. The companies love to hear that."

Someone just like them

Parents of the children involved say the social benefits the group provides equal or surpass the physical benefits of a prosthesis.

"Charlie doesn't know anybody else in Nashua with a prosthesis," said his mother. "He's the only one like him there, the only one at his school. He comes here and he sees these other kids, and they are going through the same things he is. It's good for him. It's good for me.

"They interact with kids every day that aren't like them, so when they see other kids that are, it is a really big deal."

"Children that are exposed to children that have limb differences can have different reactions, some really good and some really bad," said Kelli Mead, Carter's mother. "Out of every 10 kids you get into a room with a child with a limb difference, two of them are going to freak out. They shy away and don't know what to say, or they start crying and run the other way.

"Even in a school setting, a lot of kids don't understand what to say or do, so they can act negatively towards your child. So to come here, where they can see other kids with limb differences and compare differences, is a wonderful experience for them and something they really need."

Several parents discussed how difficult interactions between their children and other youngsters can be. But sometimes other adults affect a situation.

"There are parents who don't know how to act around Charlie's little hand or little foot," said Smith. "They shy away or pull their kids away because they don't want them to ask me or Charlie questions because they think it might be inappropriate. You have to reach out to them, ask them if they have questions, if they want to see his leg, if they want to knock on it. You feel like half the time you are protecting your child, shielding them from things, and half your time helping others learn how to interact with amputees."

Jim Gauge, grandfather of Ayden Loveren, 6, of Goffstown, said: "Our experience has been a little different; maybe it's because we are a little more isolated. Ayden had his leg amputated when he started going to the day care that he still goes to, so the other kids, this is all they've ever known of Ayden. They are aware of it, but it's not strange to them. Maybe that will change when he goes to a bigger school."

"It's easy for me because I come here and I see other kids like me," said Mohammedhasan. "I'm used to it. I've been with my leg for a long time. It's not scary for me. But other kids might not know how to act."

Kid-friendly designs?

Next Step opened in Bedford in August 1996 and moved to its Dow Street location in April 2002. A lab located on-site combines artistry and engineering to create custom-fitted devices for each client.

For young clients, Next Step creates special coverings so the kids feel more comfortable, such as one featuring the animated character Sponge Bob.

Albuquerque said he and other Next Step staff are looking at turning this group of children into more than just a playgroup.

"We're in the process of trying to get something together for the summer," said Albuquerque. "Maybe involving kids from all our offices and just make it about getting outside and trying new things and having fun. You can see the effect running on a wooden ramp in the middle of a mill-yard has had on these kids. Imagine what an adventure at the beach or in a state park could do for them."

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