Victory Junction Gang Camp, August 12-16, 2009
The Transverse Myelitis Association: Fabulous 50’s Week

Sue Mattis

Sue has TM and is a leader of the Pennsylvania Support Group.  She volunteered to come to our camp this summer and served as a crew chief. 

VICTORY JUNCTION! HOW DO YOU FEEL?
WE FEEL SOOOOOOOO GOOD!

Do you ever feel so good about something that you just have to tell someone about it?  That’s how I feel about my experience as a Crew Chief at Victory Junction Gang Camp this summer.  It was our kids’ turn to experience what fun camp can be and just how good they could feel about themselves; maybe for the first time in their lives.  For those five days, they could be just kids having fun with other kids; and, of course, with us ‘big kids’ too!

WOW!  What an absolutely incredible facility.  Kyle and Pattie Petty have made the dream of their son Adam into a reality.  It is far more than what I could have imagined it to be.  This is the place where children are able to play and have fun and be themselves regardless of their disabilities.  They have every right to be able to experience these things in their lives and because of the generosity of the Petty family, the NASCAR community, and many others who support the Victory Junction Gang Camp, they are able to do just that.

The staff at Victory Junction is the most kind and caring group of individuals you could ever meet.  They have such incredible energy, drive, compassion and love for the children who come to camp.  The medical staff is second to none and makes sure that all the campers are safe and healthy.  Dr. Peter Sim is the Director of the medical staff and is truly a gifted and big-hearted man.

Life in the day of a camper at VJGC is invigorating and exciting.  Pole Position Activities were from 7:30 – 8:30 A.M. While these were optional activities, very few wanted to miss out even at this early hour.  Campers were up and at em’ to participate in mini golf, boating, fishing, the Fab Shop (a fun version of a beauty shop) or Adam’s Race Shop (a virtual NASCAR building).  Breakfast began in the Fuel Stop at 8:30; music and dancing followed to get your blood pumping for the day’s activities.  Two time periods from 9:30 – 10:45 and then from 11:00 – 12:15 gave the campers and their families choices again of the early morning activities, as well as arts and crafts, the waterpark, archery, bowling, the maze, horseback riding or play in the gym.  These activities got you geared up for another great meal at the Fuel Stop at 12:30.  Are you tired yet?  If so, you have time to recharge from 1:30 – 3:00 by watching a movie in the theatre or retreating to your cabin for a little R & R.  Back to activity choices from 3:00 – 6:00 and then another time to refuel our bodies with dinner.  Each evening after dinner there was something special planned for all the campers and families.  Thursday night: NASCARNIVAL!  How about two race teams who had dinner with the campers then demonstrated their own pit stop with a real race car and changed all four tires in under 20 seconds!  How about hot air balloon rides, popcorn, donuts, games and a visit from Miss North Carolina!  Friday night: THE CUCUMBER 500! Is it possible to hollow out a cucumber, make it sea worthy and race it down the Lazy River?  Absolutely!  Saturday night: STAGE NIGHT!  I have to admit that I never saw such an incredibly talented group of campers in my life!  We had robots, singers, dancers, joke tellers, comedy routines and musicians just to name a few.  An evening of fabulous entertainment!

There was so much to do and so much fun to be had at camp, but I also feel the need to address another aspect of the TMA camp at Victory Junction.  Because of the love and commitment that Dr. Kerr, Dr. Kaplin, Dr. Pidcock, Dr. Greenberg and Janet Dean have for their patients and their families, they came to camp with their families and made themselves available to all in attendance for educational programming, as well as informal consultations in regards to medical issues.  And truth be told, no one had more fun at camp than these people did!  These doctors proved again to our TMA community how dedicated they are to treating their patient’s needs and addressing any issues they are facing medically and emotionally.  How blessed we are to have this team behind us!

On an individual family basis, it is hard to know exactly what their feelings were about the VJGC experience.  I can share my observations.  I can’t think of anything that could have made these children happier than the experiences they had at camp.  Many of these young folks were given the opportunity to do things for the very first time just because the facility is set up to allow them to do so in spite of any disabilities.  Being in a wheelchair, or using crutches or a cane doesn’t interfere with participation in activities at camp.  The children aren’t left out of any activity.  They are part of everything that happens.  No exceptions.  You can socialize with others your age who are dealing with the same mobility and medical issues.  You are no longer different.  You belong.  They understand you and you understand them.  You can be yourself.  Siblings find common ground with siblings in other families.  They understand what it is like to deal with someone else in the family seeming to get most of the attention.  They can understand what it is like to feel like your family isn’t a “normal” family.  They understand your feelings, because they have those feelings themselves.  What a unique opportunity it is for parents to be able to share with other parents what they deal with on a daily basis as being caregiver to a child with TM or ADEM or NMO.  They can talk with other parents and discuss everything from medical issues to emotional issues and what the future holds in store for their children.  Where else could you find such a bonding of families than at this camp?  We need to hold hope in our hearts that our families will be given this chance to return to Victory Junction Gang Camp.

Barbara Sattler

Barbara has TM and is the leader of the Arizona Support Group.  She volunteered to come to our camp this summer and served as a crew chief. 

“This place almost makes it worth having TM.” I heard this from an eleven year old camper this summer.
    
I was lucky enough to be able to volunteer at Victory Junction Gang Camp.  I had heard about camp from the newsletter and decided I wanted to go.  I have to admit my primary motivation was to have a chance to meet Sandy, Pauline and Debbie and to talk with others who had TM.
    
My first surprise was the application process.  I had recently retired as a judge and have TM, so I assumed they would just take me.  Instead, to apply, you have to go through a thorough selection process, including a comprehensive application, references, which are checked, pass a background check, a health and medical review and personal interview. 
    
My second surprise was the facility itself.  I had been to summer camp before and had an idea of what to expect.  Wrong again.  The facility is built around a race car lap and the various buildings have model race cars, racing posters, and other references to auto racing.  The camp activities include bowling, archery, horseback riding, a water park, fishing, boating, crafts and wood shop. All the activities are accessible to individuals in wheelchairs.  Attendance at camp is free to campers and their families. 
    
The most significant difference from my experiences at summer camps was the attitude of every staff member.  Each and every one of them is there to make sure the campers and their families have a terrific time. Several times each day, I saw a staff person reach out to motivate a camper, include a camper or compliment a camper on how well they were doing in an activity.   I met an older man who was recruited for one weekend five years ago to work in the kitchen, and he came back every year.  He told me, “I was wasting away in retirement until I found this camp.”  
     
It began as a dream of a young man, Adam Petty, the son of Kyle and grandson of Richard Petty.  Most of you probably know Kyle and Richard from their NASCAR fame, but you may be surprised about their charitable accomplishments.  Adam, as a child, accompanied his parents to present charitable donations to hospitals and also to visit children.  Seeing kids in the hospital unable to do what he could, he conceived of building a camp that was specifically for disabled and sick kids.  When he grew older and started racing himself, he got a loan on his future earnings to build the camp.  Unfortunately, at age 18 he died in a practice race.  Knowing this was their son’s dream, Kyle and Pattie Petty built the camp in honor of their son and have been raising funds to keep it going.  It is one of the NASCAR charities. 
   
Mealtime is really special at camp.  After each meal, some of the volunteers lead the group in dancing and singing and quickly everyone picks up a few special cheers.  While I tended to watch, it was clear to me that this was a very special time for dancers and watchers alike, as it set the mood of togetherness and warmth.  You don’t have to be either coordinated or have two working arms or legs to be part of the fun. 
    
Included as part of camp staff were the medical people from Johns Hopkins, the University of Texas Southwestern, and Kennedy Krieger Institute.  They were not only available for consults to the campers and their families, but participated in daily activities and presented medical lectures.  Not only are these doctors brilliant and compassionate, they are great fun.  I have no doubt, if awards were handed out, several would have been campers of the week.
    
As if all of this wasn’t enough fun, one night I emerged after dinner to see camp transformed with the presence of two hot air balloons, tattoo booth, singers, a Krispy Crème donut booth, and a NASCAR team racing a car around the lap and then showing the group pit stops.
    
While the activities were great, for me, the best part of camp was meeting people.  I had heard and read about Sandy and Pauline for years.  I knew they had to be inspiring, but I was unprepared for how inadequately that term describes them.  All I can say is both of them are awesome.  Besides being knowledgeable, compassionate and hard working, they are great fun.  As an added bonus, Pauline has the most wonderful service dog on the planet, Kazu, who showed us his skills on talent night.
    
My job at camp was called crew chief.  I was assigned to one family to make sure they knew what activities were available, to help out if they needed something and to help them have fun.  I was so fortunate to have been assigned to the Harrington family; 21 year old Ashley, who contracted ADEM when she was 19, and her parent’s, Jeff and Mary.  I heard about Ashley before I met her and knew she was in a wheelchair and couldn’t speak.  I was concerned that I wouldn’t be able to have a relationship with her or be of any assistance.  Like many fears, it was unfounded.  Because of Ashley’s outlook and wonderful smile, it was easy to relate to, connect to and communicate with her.  She was willing to try almost everything, although her favorite place was the fab shop which is a combination hair, nail and make-up salon that we visited often. We even acted in a skit together.  Because of her attitude, Ashley was clearly a favorite of everyone and was an inspiration to me.  It’s clear she got many of her great qualities from Jeff and Mary. 
   
While I am sure the campers had a great time, it would be difficult to decide whether they benefit more from camp than the volunteers.  You can’t help being moved by the courage of the campers and their families and the dedication of the doctors and staff.  I know this experience has made me a better person.  I would encourage you to apply to be a volunteer at the next TMA retreat weekend or family camp.  While it is a wonderful way to give something back to our community, it is also a great way to do something incredible for yourself.