by Bill Greenberg
As the snow begins to melt and winter gives way to spring, MDA staff
and volunteers across the country prepare for yet another longtime MDA
tradition MDA summer camp.
Every summer since 1955, children ages 6 to 21 affected by neuromuscular
diseases have had the opportunity to spend a fun-filled week at accessible,
barrier-free campsites. During this special week, campers enjoy activities
ranging from outdoor sports like swimming, boating, baseball and horseback
riding, to less physically demanding programs like arts and crafts projects
and talent shows.
Meanwhile, parents enjoy a week of richly deserved respite from their
day-to-day challenges, secure in the knowledge that their childrens
special needs will be met by trained camp counselors and MDA staff.
Of course, parents also appreciate MDAs commitment to their childrens
safety. Each camper is teamed up with an able-bodied volunteer counselor
carefully screened and selected in advance by MDA who serves as
caregiver, helper and companion. (See "Getting
to Know an MDA Camper." )
This year, MDA expects nearly 4,300 campers to attend one of almost
90 camp sessions from Alaska and Hawaii to New York and Puerto Rico.
And while specific activities will vary from site to site, MDAs 47
years experience suggests that at every camp there will be friendships
formed, hidden talents unearthed, practical jokes and high jinks, and
a seemingly endless supply of good old-fashioned, loud, raucous, occasionally
messy and downright childish fun.
There will also be memories the kind that last forever and experiences
that will change the course of some campers lives.
Not the Only One
For most children, one frustrating aspect of growing up with a physical
disability is being noticeably "different" from their peers,
trying to "fit in" in a world that seems to have been designed
for everyone else.
So it often comes as a pleasant surprise for kids with neuromuscular
diseases to discover that not only is there a "world" thats
been created especially for them but there are other kids in that
world.
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Denise DiNoto (at right) and close
friend Jen Ayala (nee Hitchcock) shared laughs at the Wagon Road
Camp in the 1980s. Years later, DiNoto (far left) served as a bridesmaid
at Ayala’s wedding.
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Denise DiNoto, 29, was the youngest of Sam and Carolyn DiNotos six
daughters, growing up in the tiny town of Bainbridge, N.Y.
"I always joke and say that Bainbridge has 2,500 people and 10,000
cows," she says.
When she was little, DiNoto was discovered to have Charcot-Marie-Tooth
disease (CMT), a diagnosis that was later changed to spinal muscular
atrophy.
DiNoto was the only member of her family with SMA. And she was the
only child in her upstate New York hometown with a discernible physical
disability.
Then, at age 7, DiNoto attended her first MDA summer camp.
"It wasnt the first time Id ever seen another child with a physical
disability Id seen people on the Telethon or at clinic but it was
the first time Id ever got to spend time with them and develop friendships
with them."
The following year, MDA moved DiNotos camp to the Wagon Road Camp
facility, operated by the Childrens Aid Society and located in Chappaqua,
N.Y., roughly 35 miles north of New York City.
"That really opened my eyes and gave me a broader perspective,
in terms of what was normal and what wasnt," she explains. "Coming
from a really small town, I never had any experience with people from
other ethnic or cultural backgrounds, and here I was going to summer
camp with inner-city kids from Brooklyn and the Bronx."
During the 1980s, local MDA campers shared their camp activities with
children with other illnesses and disabilities.
"We were there for two-and-a-half weeks with kids who had asthma,
developmental disabilities, orthopedic and cognitive impairments -
the whole spectrum," DiNoto recalls. "And we were all there
at one time, so that was pretty intense."
Instead of needing help because of her own disability, she would find
herself in a position to help others meet the challenges of their disabilities.
"I was actually one of the more physically functional kids,"
she relates. "By the time I was 12 or 13, we were doing more counselor-type
stuff, even though we were still campers."
In fact, it was working with hearing-impaired children at the Wagon
Road Camp that inspired DiNoto to learn American Sign Language and later
to pursue a career as a speech-language pathologist.
"When youre the only kid in your school whos dealing with a
disability, you start to think that nobody else really understands,
even though they might say they do," she explains. "But when
youre surrounded by people with all sorts of disabilities, you see
that theres a lot that you can still do to help somebody else out.
And the fact that I was able to help other campers with daily tasks
really made me more aware of what I had to offer others."
Today, in addition to her work, DiNoto coordinates the Ms. Wheelchair
New York pageant, having served as Ms. Wheelchair New York in 2001 and
finished as first runner-up for the Ms. Wheelchair USA title.
Also an amateur musician and composer, DiNoto cites her experiences
at MDA summer camp as a key influence behind her self-confidence, determination
and all-around positive attitude.
"Camp taught me to not feel sorry for myself," asserts DiNoto,
who lives in Waterford, N.Y. "I was surrounded by people who had
less physical ability than I did, who were not complaining about their
lot in life. So what did I have to complain about?"
Lifelong Friendships and Then Some
It was the summer of 1989, and 13-year-old Terra Clifton was making
her first trip to Camp Hastings, located just north of Chicago. Terra,
who has congenital myasthenic syndrome, wasnt quite sure what to expect
from the MDA camp, and was especially nervous because she didnt know
any of the other kids.
But veteran MDA camper Matt Messmer, who was also 13, noticed her right
away.
"He came right up to me and said Hi," she recalls. "He
was very sweet at first. Then the practical jokes started."
Not surprisingly, Matt, who has spinal muscular atrophy, remembers
it a little differently.
"Thats what she likes people to think," he says with a laugh.
"But dont let her kid you. When it comes to pranks, she gives
as good as she gets."
In other words, the two teen-agers quickly became fast friends, as
they enjoyed such camp activities as sports, swimming
"and dances," Terra recalls with a smile. "I remember
lots of dances."
Before long, Matt and Terra became virtually inseparable at camp, and
during the rest of the year, as well.
"We lived about 40 minutes apart, so we had to rely on our parents
to take us to see each other," Terra recalls. "They were very
accommodating in the summer but less so during the school year,"
she says with a chuckle.
"We talked on the phone a lot," Matt agrees. "And it
got to the point where we couldnt wait for camp to start, just so we
could have a whole week together."
Once they became old enough to drive, things got really serious.
By the time Terra and Matt had both graduated from high school, they
knew that whatever the future held, they were determined to face it
together. So they moved to Tucson to attend the University of Arizona.
In 1996, the couple got married, and later became the first married
couple to enter the UA College of Law together.
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Terra Clifton and Matt Messmer met
at Camp Hastings in 1989 (left). Today, the two are married and
both are attorneys.
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Today, the Messmers are enjoying the fruits of their hard work. They
both passed the Arizona Bar examination in October 2001, and have embarked
on careers as attorneys Terra, 26, is in private practice, while Matt,
27, is a public defender.
Needless to say, fond memories of MDA summer camp will always have
a special significance for the Messmers.
"Thats one of the things I thank MDA for the most," Terra
says. "I dont know where Id be today without MDA summer camp."
Once a Camper, Always a Camper
Some campers and parents experience a degree of trepidation when
getting ready to attend their first MDA summer camp. For most kids,
its the first time theyve been away from home and family for any significant
amount of time. Then, by the end of the week, they dont want to go
home.
Just ask Angela Wrigglesworth of Houston.
Wrigglesworth, 25, was found to have SMA as an infant and has always
relied on a wheelchair for mobility.
"I used to spend most of my time indoors," she recalls. "I
was a total city girl, and I was terrified of bugs. Now Im much more
outdoorsy, and bugs dont bother me at all."
Wrigglesworth first attended the Houston-area MDA camp, then held at
Camp Manison near Waco, Texas, when she was 5 years old.
"Going to camp changed everything for me," she asserts. "Being
with other kids who had disabilities just like I did was very liberating."
When Wrigglesworth was 6, she started making appearances on local segments
of the MDA Telethon. She also served as Texas MDA Goodwill Ambassador
in 1985 and 1986, and received the MDA Personal Achievement Award for
Texas in 1997. Wrigglesworth is a member of MDAs National Task Force
on Public Awareness.
In 1998, MDA moved its camp to the newly constructed Camp for All,
a completely barrier-free camp specially designed for chronically ill
or disabled children, located near Burton, Texas. And in 2000, when
Wrigglesworth became too old to attend MDA camp as a camper, she simply
applied for a job at Camp for All.
Today Wrigglesworth is a third-grade teacher at Klenk Elementary School
in Houston during the week, spending weekends and summers as an activity
facilitator at Camp for All. "We facilitate everything from organized
camp sessions, like the MDA camp, to family weekends and even corporate
retreats," she explains.
"Youd think as a camper that it cant get any better, but I think
working at Camp for All has really made me a better person," she
asserts. "It also helps me to be a better teacher. It helps me
keep things in perspective to be able to help the kids I teach to
realize and appreciate the many gifts they have."
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Angela Wrigglesworth (at right) enjoyed MDA summer camp in Texas
as a youngster. Today (left) she works part of the year at Houston’s
Camp for All, where MDA summer camp is held.
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Of course, Wrigglesworths involvement with Camp for All has also made
it possible for her to continue to participate in MDA summer camp. This
year will be her 21st MDA camp, with no end in sight.
"I have a thousand wonderful memories of MDA summer camp,"
she says proudly. "Now Im fortunate enough to have the chance
to create a thousand more."
Tens of Thousands of Campers Agree
The cost to MDA to send a child to summer camp is roughly $525, but
thanks to the generosity of those who support MDA, theres no charge
to the camper.
And the benefits of attending MDA summer camp are priceless.
Sure, theres an abundance of fun and frolicking. But to former campers
like Wrigglesworth, DiNoto and the Messmers, the real benefits come
in a much subtler form the lifetime friendships, the improved self-esteem
and confidence, and the chance to spend at least one week out of the
year in a place where physical disabilities are the rule rather than
the exception.
Right now, your local MDA office is looking for both campers and volunteers
call today.
Youll be glad you did.
Click Here to Read
"Getting to Know an MDA Camper"
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