TMA 2008 Distinguished Service Award 

Peter Sim, MD, FACEP

The Transverse Myelitis Association 2008 Distinguished Service Awards were presented to Pattie and Kyle Petty and to Dr. Peter Sim.  The awards were presented during a ceremony at the 2008 Rare Neuroimmunologic Disorders Symposium in Seattle and recognize the wonderful contribution that is made to the TMA community by Victory Junction Gang Camp.  VJGC is one of Paul Newman’s Hole in the Wall Gang Camps and is located near Greensboro, North Carolina.  The camp was started by the Petty’s to honor the memory of their son, Adam.  It was Adam’s idea to establish the camp to help children with serious illnesses.  Kyle and Patty have built and operate a camp that has a NASCAR theme and feels like Disneyworld to the children.  The facilities and the recreation program are totally accessible.  The directors and staff at the camp are exceptional, providing children a safe and loving place to spend a week or a weekend and giving them the opportunity to leave their challenging physical conditions behind them.  And there are many volunteers who come to the camp to provide their time, energy and care.  VJGC is just a remarkable place.  Jim, Debbie, Paula and I are regularly astonished that our very grassroots organization that advocates for such rare disorders and with just 7,000 members who are spread around the globe have been afforded such a wonderful opportunity and generous gift. 

It was evident from very early in the TMA’s existence that children and families in our community shared special issues and concerns.  We’ve estimated that about 20% of our membership are children with TM, ADEM and NMO.  The TMA wanted to do something for children and their families.  The Children’s and Family Workshop was held in Columbus in the summer of 2002.  It was an amazing experience.  Our medical advisory board doctors and their families attended.  The physicians presented a great educational program to the parents along with pediatric specialists from the Columbus Children’s Hospital.  The physicians’ families served as companions for the children who attended from across the country and around the world.   We developed a recreation program for the children with the help of adaptive recreation specialists from the Columbus Recreation Department and Children’s Hospital.   For most of the children, it was their first opportunity to meet another child with TM. 

I spent the entire year planning the workshop and fundraising so that there would be no cost for the parents.  When the workshop was completed, Pauline told me that I had accomplished an incredible feat and that she would never allow me to do anything like it ever again.  And as with most things, Pauline’s response was reasonable and correct.  I had been so immersed in this work that I was not able to get anything else done for the Association.  There were no newsletters published during that year.  It had been an amazing experience, but it was not a judicious use of the president’s time for an entire year. 

I knew we needed to do something for the children and families in our Association, but we needed to find a better way to do it.  Leslie Cerio, Shannon O’Keefe and Stephen Miller volunteered to serve on a committee to find a camp that would provide a great experience for our children.  They searched for a very long time and they didn’t meet with very much success.  The search was so difficult because we had challenging needs and most camps serve a specific group or a particular geographic area.  Finally, Leslie found the medical director at Victory Junction Gang Camp, Dr. Peter Sim. 

Our search committee had a long and complex list of needs and desires for our camp experience.  The camp needed to be totally accessible – the facilities and the recreation program, and there had to be a staff with expertise in working with children with disabilities.  The camp had to have a medical staff that could manage the complex issues that many of the children experience.  The camp needed to be able to accept ventilator dependent children. The camp needed to accept children and families from across the United States and from around the world.  The camp had to accept that we represented very rare and little understood disorders.  We wanted for the physicians from our medical advisory board to be able to attend the camp so that they could offer an education component during the camp.  And we wanted for siblings and parents to be able to attend with the children who have TM, NMO, ADEM and ON.  And the camp needed to be free for the families!     

Leslie initiated a series of discussions with Dr. Sim.  Leslie told me that Dr. Sim understood our needs from the outset and that he reacted very compassionately to the difficulties we had been experiencing in finding a camp that would entertain the idea of accommodating such a rare disorder community.  She asked me to call Dr. Sim and to share my passion for our cause, which I did.  I found Dr. Sim to be incredibly sensitive to our issues and he was filled with such heartfelt compassion for our children and our families.  Through his conversations with Leslie, Dr. Sim became a wonderful advocate for the TMA and for our children.  Dr. Sim made our case to Pattie and Kyle Petty and to the other directors at Victory Junction.  Shortly thereafter, I received a phone call from Leslie.  She said that our children and our families were going to have a weeklong family camp the following summer and that VJGC was thrilled to work with us to structure the camp experience in the fashion we had suggested.   And Pattie Petty had also suggested that they could offer a weekend during the fall for an older teen and young adult weekend for people with TM, ADEM, ON and NMO who are 16 to 21 years old. 

I finished my conversation with Leslie, I hung up the phone, and I stood in the middle of the kitchen and just cried uncontrollably.  Of course, Pauline totally freaked out, because she assumed that someone had died. 

So, that fall, we had the first retreat weekend.  The following summer, we had our first family camp.  These were transforming experiences for all who attended.  It is difficult to describe the VJGC experience.  After being at the camp for a few hours, Pauline announced to me that she wanted to quit her job and come to work full time at camp.  VJGC committed to working with and serving our community when no other camps or programs were interested.  They accommodated every complicated request we made of them and they fashioned a wonderful experience for the families that included recreation, education, and social and emotional support. 

The material contribution that the Petty’s and Victory Junction Gang Camp make to the TMA community represents the most generous gift offered to our community.  And yet when we assess the true value of this experience for our children, teens, young adults and families, the greatest gift is measured not in dollars and sense, but rather, in smiles, laughter, joy, and peace.  To watch a child that has been paralyzed by TM speed down a water slide, have their hair dyed pink and blue, bowl, fish, ride a horse, dance, and spend a week playing with their families, is beyond words to describe. 

The work VJGC does is a blessing.  These kids face such formidable challenges in their lives.  I know the difficulties that Pauline has experienced; in fighting so hard to get back her life and her livelihood and her happiness.  Every day can be a struggle to feel good and to feel good about oneself.  It is the same for these kids – only more complicated -- complicated by the biological, emotional, psychological and social issues surrounding their growth and development.  There is no society on the face of the earth that rewards difference.  Culture is by definition the constant pressure to conform.  It is a battle for these kids to not be able to walk or run.  It is a struggle for the kids to deal with the anxieties and emotional discomfort surrounding bowel and bladder dysfunction.  They suffer with pain and they struggle with the debilitating burden of fatigue.  And there is the insidious force of depression that can magnify the intensity of every horrible symptom and suck the energy and enthusiasm out of the very goodness of life.

VJGC gives these kids a place where they are not different.  VJGC gives them an experience where they can be enveloped in inclusiveness, safety, care and love.  VJGC gives them an environment where there are no physical barriers, or social barriers, or emotional barriers.  This is the closest these kids are going to get to experience being a kid – a carefree kid who can experience the joy of childhood.  That is indeed a blessing.  And the siblings can share in this experience as equals – they, too, can be the centers of attention.  And the parents can spend a week watching and experiencing their children in this environment.  You cannot put a value on this experience – it is beyond our ability to measure, because it has a value measured in how we feel.  This is an experience that is measured in our hearts – and in the hearts of these families and in the hearts of these very special and beautiful children.

The TMA thanks Pattie and Kyle Petty and Dr. Peter Sim for turning our wildest dreams into a reality.  Thank you for creating an environment where all children can be children.  Where a child with a debilitating and horrible disease that has no cure gets a vacation from being different.  Where a child who faces barriers from participation in daily life only knows inclusion.  And where a child who is faced with so many reasons to be in pain can experience unbridled joy for all of life.

Dr. Sim attended the 2008 Seattle Symposium with his wife, Anna.  It was an honor to have Peter and Anna there for the meeting and it was our highest honor to recognize Dr. Sim and Pattie and Kyle Petty for their distinguished service to our community.

Previous awardees of The Transverse Myelitis Association Distinguished Service Award are Chitra Krishnan, Cathy and Dan Dorocak, Jeanne and Tom Hamilton, Amy and Darian Vietzke, and Pamela and Morgan Hoge.