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| Adrienne Damicis, 15, of Scarborough, helps fellow amputee Harvey Perry, 5, run through occupational therapy exercises at No Limits Camp week at the Pine Tree Camp, in Rome. Courtesy photo |
SCARBOROUGH — Adrienne Damicis wanted to learn how to ride a unicycle.
So, she did what any other determined young teen would do
– she took up a spot in the family driveway and practiced, over and over
and over again. She fell. She remounted. She wobbled. She struggled. She fell.
She tried again.
Over and over, for days on end – her family pleading with
her to give it a rest as the sun dipped below the horizon – Damicis battled the
one-wheeled demon. But she wouldn’t give up. Failed attempt after failed
attempt, she kept at it until, finally, almost as if by magic, she found the
sweet spot where her weight balanced just right against pressure on the peddles,
and she was off.
Nothing unusual about this story – happens every day, at
suburban homes all across America, right?
But here’s the kicker: Adrienne Damicis only has one
foot.
This summer, Damicis set out to impart that grit,
determination and sunny attitude on other kids coping with amputations, as she
traveled the country as a mentor for No Limits Camps in Idaho, Florida and here
in Maine.
A TOUGH START
Now 15 and getting ready to enter her junior year at
Scarborough High School, Damicis was born with tibial hemimelia. That’s doctor
talk for “missing the bottom part of the leg bone.” Although she was born with
a right foot, the foot bone, so to speak, was not connected to the shin bone,
because most of the tibia just wasn’t there.
“Because I wouldn’t be able to walk, my parents decided
to have an amputation,” said Damicis, during a recent interview at Scarborough
Grounds. “I had that operation when I was 14 months old.”
“She had the foot bones, but they weren’t held in place
by anything where her ankle should be,” said Damicis’ mother, Joanne Damicis.
“Her foot was loose and pointed down and just in the way. So, they took off the
foot so a prosthesis would fit on comfortably.”
That operation, at Children’s Hospital in Boston, had to
wait until Damicis was 14 months old, because she also was born with a heart
condition that required immediate surgery. When it was safe to perform the
amputation, doctors also corrected a “floating thumb” on Damicis’ right hand,
leaving her with just three fingers.
“The first year was eventful,” recalled her mom. “We had
open-heart surgery at 3 weeks old. I started back to work [as a pharmacist]
when she was 10 weeks old, thinking we were getting back on our feet, but
within a month they thought she might need to go back in. We made it to a week
before her first birthday when we had to repeat the open-heart surgery.
“We were reeling for the first couple of years,” her
mother said. “We spent pretty much some of every week in a doctors office.”
But that was then, and if Damicis proved one thing to her
family – including father, Jim, a local economic development consultant, and
older brother, Patrick – it’s that she’s a fighter.
“Now,” said her mom, with a laugh, “other than visiting
the cardiologist twice a year, she goes to the pediatrician pretty much only
when they force us to bring her in for a physical.”
Although it may seem insurmountable to some for a young
girl to overcome the handicaps Damicis has, she’s not one to let anything hold
her back from living a completely normal life.
“My cardio is restricted some,” she said with a shrug.
“I’m not allowed to do competitive sports teams at my school. But other than
that, I do what I want. Dance is one of my favorite things, and I take dance
lessons about five hours a week.”
This past year, Damicis also won her age-level in the New
England Division for woman’s adaptive ski racing. So, take that, couch potato.
“We raised her to not let anything hold her back,” said
her mother, “which is good, because, as it turns out, she’s not one to let
anyone tell her, ‘No, you can’t do that.’ She never walked until she got her
first prosthesis at 16 months old. By 17 ½ months old, she wasn’t walking, she
was running. There was no hesitation.
And even before she got the prosthesis, she refused to crawl.
“She was up on her knees going just as fast as she could
go, determined to keep up with the other kids. That year, I don’t think she had
a single pair of pants that weren’t worn through at the knees.”
If true grit were all life required, Damicis would have
been set for life. But she would soon learn how hard it is to get by on
determination alone. The hardest part, her mother says, was the feeling of
being alone. No so much socially for Damicis – she always made friends pretty
easily – but even today, she’s the only amputee at Scarborough High
School. And there’s just so much about living without a limb that one can learn
in a doctor’s office. What Damicis needed was a chance to interact with others
who shared a similar life experience.
Then, eight years ago, while at a Maine Handicapped
Skiing event, the Damicis family saw a one-page flyer advertising a five-day
outing for amputees, to be held at the Pine Tree Camp in the small, Kennebec
County town of Rome.
“My husband and I thought, ‘This looks interesting,’
thinking, of course, that it was an established thing,” said Joanne Damicis.
As it turned out, Camp No Limits was so new, it hadn’t
yet settled on that name. That first year, Damicis was one of just four
campers.
“Yes, there definitely were more volunteer workers than
campers that first year,” said No Limits founder Mary Leighton of Wales.
HAPPY
CAMPERS
Leighton, who has a bachelor’s degree in occupational
therapy from American International College in Springfield, Mass., and is
working toward a master’s, was employed at Maine Therapy Corner in Winthrop
when she met a 2 ½-year-old boy named Nicholas, who was missing three limbs.
He was Leighton’s first patient with limb loss and, like
Damicis, tackled life headlong. Just as Damicis wrestled a unicycle into
submission, Nicholas’ triumph was figuring out how to manipulate a pencil well
enough to write his own name.
“Throughout his therapy, he constantly amazed me with his
determination and his willingness to try anything that was asked of him,” said
Leighton. “And so, I became determined to make sure this boy never lost his
drive to succeed, and to endure that he never had limits imposed on his
potential.”
A brainstorming session with peers on how best to keep
Nicholas motivated resulted in the first suggestion of a summer camp catering
specifically to young amputees.
“Research revealed that no such camp existed, and my
mission was born,” said Leighton.
Eventually, the No Limits Limb Loss Foundation was born,
won nonprofit status, and others rallied around to help.
From that first session in 2004, with Damicis, Nicholas
and two others, using donated time at the Pine Tree Camp for the physically and
developmentally disabled, Camp No Limits has grown to include hundreds of
campers, plus family members, at six locations across the country, including
both summer and winter session in Maine.
The Maine sessions are the most popular, by far, says
Leighton. Last week’s event in Rome included more than 120 campers from 20
states.
“We offer physical therapy, education, sports, music,
arts and traditional camping activities, with the whole family included,” said
Leighton, “but it’s all geared to one goal – to empower young people with limb
loss to discover and develop a healthy, happy and independent lifestyle.”
YOUNG
MENTOR
To that end, Damicis this year transitioned from camper
to mentor/helper, joining Leighton at No Limits sessions in Florida, Idaho and
here in Maine.
Leighton says returning campers like Damicis are what
makes No Limits the success it has become. More than anything else, she says,
young amputees need role models, which, as Damicis discovered, can be hard to
come by in one’s own community.
“It makes them realize what the older kids are able to
do, so they should be able to do it too, and why it’s important not to give
up,” said Leighton.
Because No Limits never put a cap on participation, Damicis
has ended up mentoring amputees on both ends of the age scale.
“One of the cool thing about camp is you get to help some
of the people who lost a leg or an arm later in life, because those are the
ones who definitely need the most emotional support, as well as physical
support,” she said. “People like me, who were, essentially, born this way, or
had a very early amputations, we learned to adapt early on, so it becomes just
a part of who we are. But for people who lost arms and legs to accidents, it’s
often very difficult for them to adapt, because they’ve already learned how to
do everything one way.”
With mentors like Damicis, Leighton says, No Limits
campers young and old quickly come to terms with their new normal.
“It’s pretty inspiring, and gratifying,” Leighton said,
“to see people arrive at camp who hide their prosthetic inside a long sleeve,
or pant leg, almost like they’re ashamed of it, and then, in just a few days,
they’re running and jumping and having fun, learning everything they can do, no
longer afraid of who they are.”
Getting to that point, says Damicis, can take many
routes. She helps organize events, aids campers with physical therapy, offers
advice on prosthetic use, and sometimes simply commiserates on what it’s like
to like with a limbless condition.
“Adrienne is very ambitious and will do whatever you ask
her to do,” said Leighton. “She’s become a real leader. She’s really grown
since that first camp into being a self-confident and motivated young woman.”
In fact, even though Camp No Limits is still a part-time,
mostly volunteer operation, Leighton says Damicis has already advised her that
she’ll be taking it over one day.
“Adrienne Damicis,” said Leigton, “is pretty much the
cover girl for there being no limits.”
A CLOSER LOOK
For more information on Camp No Limits, visit www.nolimitsfoundation.org, call (207) 240-5762, or email campnolimits@yahoo.com.
Locations include:
• Pine Summit Camps, Big Bear Lake, Calif.
• Day Spring Conference Center, Ellenton, Fla.
• Camp Cross, Coeur d'Alene, Idaho
• NorthBay Adventure Camp, North East, Md.
• Pine Tree Camp, Rome, Maine
• Sunday River Resort, Bethel, Maine (winter camp)
• YMCA Trout Lodge, Potosi, Mo.
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