SALEM— Will Parr was born with a rare disease called progressive neurofibromatosis, which causes tumors to grow throughout the body.
As an 11-year-old, Parr had his right leg amputated.
"You should hear these stories. One kid came up to me one time and said there was a rumor that I got hit by a boat," the 15-year-old Salem (Mass.) High freshman said. "Some say cancer. Some say boat motor. I've heard shark attack.
"Sometimes little kids will ask me and I'll say, 'Just eat your vegetables and do your homework.'"
Parr's sense of humor is equalled by his determination, which was on display this fall as a member of the Witches' junior varsity golf team.
He only picked up the sport last year. But neither his inexperience nor his choice to live without a prosthetic leg was enough to keep Parr from getting involved.
"It truly makes him happy," Will's mother Michele Parr said.
'Trying to understand'
Neurofibromatosis, according to thechildrenshospital.org, is "a condition that causes tumors to grow on nerve tissue, producing skin and bone abnormalities."
"We're still trying to understand," Michele said. "It's a very, very rare disease, especially in children. Adults tend to get it as they get older; a child being born with it is almost unheard of. We're still kind of sorting through it all."
Parr has been treated at Massachusetts General Hospital since he was born and has gone there for monthly checkups since he was 8.
"It's been the same nurses and same doctors pretty much," Parr said of his checkups. "It takes as little as 10 minutes. It's pretty simple.
"I'm glad (Mass. General) is so close. I hear about other people having to go to Texas to have certain things done. One of my roommates (in the hospital) was from Iraq."
Not slowing down
Due to a tumor, In March of 2006, Parr had his first amputation. His right leg was removed below the knee.
He immediately discovered how difficult the adjustment would be.
"I took a nap in the afternoon. I fell asleep on my mother's bed watching TV and didn't even remember that I had crutches when I woke up," Parr said. "I took my first step and went smashing down. I remember how much that hurt. I landed right on my face."
Parr had an additional surgery in the seventh grade when the knee of his right leg was removed.
He wanted to move on as quickly as possible from that procedure as well, but sometimes the outside world just doesn't move as quickly as Parr.
"I had surgery on a Wednesday and stayed home (from school) on Thursday and Friday. Amputation is kind of a big thing, but I went back the following Monday. The doctors said to wait at least a week-and-a-half," Parr said. "We had a meeting with the (Collins Middle School) principal, vice principal, nurse, me and my parents, and I was told not to take the stairs. For two days that was fine, but then I was late for Spanish class and to be quicker I took the stairs. Three teachers caught me.
"Later that day the principal called my class and told my teacher to send me to the elevator with my stuff. I went down there, and her and my dad were waiting. She said, 'We'll try again next week.'"
Parr can't slow down long enough to commit to using a prosthetic leg, despite the encouragement of his doctors and physical therapist.
"I'm still growing and it takes so much time. I have to get it adjusted and fit, and I've tried twice since my last surgery," Parr said. "It's not comfortable."
Michele Parr said, "Using crutches can be a strain on his back and arms. There's concern about that and socially, I think people have the idea that amputees should wear a prosthetic. They don't get that there would be an option."
Gives it a try
A neighborhood friend convinced Parr to give golf a shot late one night just over a year ago. On very little sleep, they went out to play the next morning.
"He showed me how to swing. I was terrible," Parr said. "I just had a good time and got hooked."
That winter Parr saved up some money, did some research and bought his own set of clubs. Then, last summer he joined the Junior League at Olde Salem Greens with some friends and met Salem High golf coach Tom Doyle.
"He told me he was going to be a freshman at Salem High and I asked him if he was interested in playing on the golf team," Doyle said. "He said yes, but he was concerned because he couldn't carry his bag and walk with crutches every day. I told him that between me, the golf course and the athletic director that we'd make it happen if it was something he wanted."
Parr took Doyle up on his offer, and the city of Salem arranged for Parr to have a special single-person cart for his matches.
Doyle also worked it out with opposing coaches so Parr could ride with someone in a cart during his away matches.
Parr still uses his crutches on the course. He maneuvers himself over to the ball, drops his crutches and swings on one leg.
He's improved by leaps and bounds, typically shooting in the low 50s for nine holes.
"The kid is an outstanding human being," Doyle said. "Every teacher, everybody that knows him just is amazed with his attitude. He's got a positive attitude about life and he's certainly a go-getter.
"He's not looking for special treatment. My freshman basketball coach has him in phys. ed. and he's playing every game, doing everything. He's not looking for anything. He's been an amazing story."
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