Wednesday, June 28, 2006

Segway Wheels Give New Independence

By Holly Anderson
Camden Bureau Chief
VillageSoup.com

Jake with his father (Andy), brother (David), and mother (Kathy). Photo credit: Holly Anderson/Village Soup

Jake Swift of Hope has relied on others to help him get around nearly his entire life. Born with "half a heart," as Jake describes his birth defect to others, the young boy's family and friends have made sure he's not been left out, even if it meant carrying the 14-year-old on their backs to class, to the ball field and to friends' homes to play videogames.

Jake's disability is a diminished lung capacity caused by a heart defect. He becomes easily winded after walking just 50 feet.

But on Saturday, Jake Swift learned that he no longer has to rely on others to get him to class or home on time, after he became the Midcoast's most recent recipient of a Make-A-Wish granted wish.

Jake's journey toward independence began a year ago, when his father, renowned restoration expert Andy Swift, got a call from Jake's pediatric cardiologist, Dr. Richard McFaul, who broached the subject of a heart transplant down the road.

The idea of a heart transplant was something that shook Andy Swift to the core, causing him to set in motion a plan to lessen the strain on Jake's heart and maybe avoid a transplant.

Andy Swift came back to McFaul and asked if he thought a Segway might enable his son to travel to and fro more independently.

"I have to admit, I told Andy that I had never considered a Segway something that someone with Jake's condition could benefit from, but it made instant sense," said McFaul during Saturday's wish granting event at the Owls Head Transportation Museum.

McFaul and the Swift family immediately began saving money and coming up with fundraising ideas to raise the more than $5,000 needed to buy a Segway.

This past winter, family friend Andrew Stewart, owner of Hope General Store, held a fundraiser at his store and began brainstorming with another Hope Corner neighbor, Ben Leavitt.

With the Swifts' blessings, Stewart decided to approach Make-A-Wish and see if Jake would qualify for a wish. And if so, was a Segway a possibility?

As it turns out, in addition to determining that Jake did in fact qualify, a Segway wish was something Make-A-Wish Foundation of Maine, headquartered in Camden, was equally excited about granting.

"This is a big thing for us, as in the over 650 wishes we've granted, this is the first Segway wish," said Tom Peaco, executive director of Make-A-Wish Foundation of Maine.

The Swifts, and likely others, initially didn't consider approaching Make-A-Wish because they thought the group solely granted wishes for terminally ill children.

A life-threatening medical condition is also a qualifier for Make-A-Wish to grant a wish.

"The misperception is common and I wouldn't be surprised if Jake's wish grows in popularity because these things tend to perpetuate themselves," said Peaco.

"We've also seen some new donors step forward because of Jake and his wish and several donors made the Segway happen for Jake," said Peaco.

McFaul has been a part of the Swift family since the day Jake was born on Feb. 3, 1981, when doctors immediately realized that the newborn was in dire need of surgical intervention to survive.

"I was the diagnostician who told Jake's parents that he had no chance of survival unless we did surgery," said McFaul.

McFaul assisted surgeon Dominick Paolini, both working at Maine Medical Center at the time. McFaul said that Jake's heart indeed was only half there and that the arteries into Jake's lungs were tiny. Since there is no pulmonary artery on missing side of his heart, today Jake survives on just one lung being fed oxygen by his heart.

Jake has a rare set of defects; McFaul said he's only known of one or two other cases like Jake's in Maine.

But after what he's seen with Jake and his Segway, McFaul said he's got at least three other patients he believes would benefit from a Segway, one of them being a college student who could use help traveling across campus to classes.

"Jake is going to be a trendsetter. Segway has been very reluctant to get involved in this due to the potential for medical liability and litigation," said McFaul. "My wish is that this is a foot in the door for other people, kids and adults, to benefit from Segway's technology and product, but without the liability that comes with marketing it as a tool."

McFaul said that Andy and Kathy Swift are parents who see beyond the liability potential and are grateful for the independence the Segway transportation tool will provide.

McFaul also likes the Make-A-Wish relationship and the fact that they are embracing a way of improving someone's life.

"Make-A-Wish has always been seen as providing experiences and it's more than that," McFaul said. "A lot of kids just go to Disney and then it's over. The Segway is a tool, it's not just an experience, and that's important."

Unwilling to give a prognosis, McFaul said that as long as Jake learns to live within his physical demands, he believes he'll do all right.

Andy Swift knows that his son is just like any other kid, with the same interests and desires. Other than the fact that Jake Swift doesn't play sports, he likes what most boys his age like.

And a Segway is right up a 15-year-old's alley. Especially if it's the XT, all terrain, model with rugged chunky wheels and a sleek midnight-blue finish.

Jake's Segway came from Segway of Northern New England in Concord, N.H. and was driven in to the OHTM conference room by the store's owner, MaryBeth Alosa.

The Swifts and McFaul had already traveled last year to the Segway factory to have Jake test drive one to make sure it was suitable, so the teen didn't need much in the way of lessons Saturday. But just in case he needed a refresher, Alosa went over the fine points and had Jake entertaining the group with mastery of s-curves and stops on a dime.

"At his age, Jake needs and wants his independence," said Kathy Swift.

"And for a teen, the cool factor is huge," said Andy Swift. "Riding a Segway is cool and it won't be seen as a disability."

From the looks on the faces of Jake's friends in attendance at OHTM, Jake is just about the coolest around.

The complete contents of this story originally appeared in the June 28, 2006, edition of the VillageSoup Times
(Knox County).