VJGC TM-ADEM-NMO Family Week, August 18-24, 2007
Thank you!

Since the Children’s and Family Workshop in Columbus, Ohio in 2002, the TMA has been seeking ways to bring families together who have children with rare neuroimmunologic conditions.  Through the efforts of Leslie Cerio (mother of a child with TM), the compassion and advocacy of Dr. Peter Sim (Medical Director of VJGC) and the generosity and kindness of Pattie and Kyle Petty (Executive Director of VJGC), the TM-ADEM-NMO Family Camp at Victory Junction was established.  We had families come to camp in North Carolina from across the country and around the world.  The families were able to share in a camp experience which was entirely inclusive for their children; the recreation program and the facilities are completely adaptive and everyone had so much fun!  The staff and volunteers at VJGC are incredible.  In addition to the families, Drs. Pidcock, Greenberg, Kaplin and Kerr, from our medical advisory board, came for the week, and most of them came with their families.  The physicians, joined by Dr. Sim, made formal presentations to the parents during three morning sessions.  One of the parents, Thomas Nybo, who attended from Denmark, is a physical therapist.  Thomas gave an excellent presentation on a medical procedure that they had done for their son to treat his spasticity.  The physicians were available all week long to speak with parents and to respond to questions.  It was a truly wonderful week for everyone involved!   

We are all so incredibly grateful for the opportunity the Petty’s have created for the TMA community at Victory Junction Gang Camp.  The children with these disorders have difficult lives.  The everyday lives for these families are filled with incredibly challenging experiences.  To share in a week long break from these challenges was a transformative experience for everyone.  From the awesome water park to the arts and crafts, to the bowling and golf and archery, to the horseback riding, to the dancing at every great meal to the carnival and talent show, it was a week filled with smiles and laughter. 

Thank you Pattie and Kyle.
Thank you Directors and Staff.
Thank you to the wonderful volunteers who come from all over the country to make a difference in these children’s and families’ lives! 

Awesome!  That is what we thought of as we were at the camp and as we tell friends and family about our experience at the camp.  When the dancing started after dinner the first night at camp, we knew that this was not any ordinary camp.  It was a GREAT camp, per our son, Jason, age seven, onset of TM at 10 months.  Our daughter Erin, age 12, “This was our best vacation ever.”  She also liked that everyone was included and there was something for everyone.  Michael, age 3, liked how one of the nurse volunteers took care of his bear that needed some tender loving care and a few small repairs.  The bear was well taken care of in the clinic.  For Mom (Amy) and me (Darian), it was a great way to spend a wonderful week with families that understand our lives and to reconnect with friends we have not seen for many years.  The volunteers were great.  Erin also thanked Jason for the gift of the camp.  She knew that if Jason did not have TM, we would not have had this great opportunity!  While Erin and all of us would prefer that Jason did not have TM, it is awesome that Jason was able to give a gift to her since he does take a lot of care.  He was very proud.  This is what it is all about - a great gift provided by the donors, staff and volunteers, to the families and time for the families to share a great experience.  On the way home I wrote the following poem that our family would like to share. 

Victory stands for overcoming the challenges we face, with grace,
Junction stands for a place we come to gather as one, to have fun,
Gang stands for those that volunteer their time and joyful spirit, they really know how to make it special,
Camp stands for an awesome place,
Transverse, even though a medical term, stands for how we have gathered from around the world, even those that could not have gathered in person,
Myelitis stands for a disease that I wish I had not known, but it is why we gather with family and friends, for it will not overcome us,
Association stands for a group of family and friends that are there to always support, share, have fun, love, lean on, they understand,
Week stands for a magical time that will never be forgotten, never.  Thank you VJGC and TMA.
The Vietzke Family

We cannot express how grateful we are to you two for what happened last week.  It meant so much to the kids and their families and it just brought a whole community together.  A community -including the health care providers and the Transverse Myelitis Association - that is now more committed than ever to CURE this disease!  To see the kids acting normally and laughing, even though in some cases they were ventilator dependent, was just amazing.  To see the kids all of a sudden realize that they are part of a community that supports each other and is working hard to get rid of Transverse Myelitis was incredible.  To see the families and caregivers not only get a  break from the constant demands of caring for these kids but also to see their children enjoy life as a normal child for a while was stunning.  Thanks so much for everything.  This was a life-altering experience for all of us.  
Doug, Kathleen, Caroline and Vivian Kerr

When asked “tell me about what you liked about Victory Junction?”  Riley replied, “Wow, it was so awesome, wow!  They had horses, a water park, bow and arrows, I liked everything!  I cried when we had to go.  I miss all of my friends there.  I want to go back!”
Riley Blee

My experience at Victory Junction was the highlight of my summer. The camp itself has been expertly put together to provide all the fun, excitement, challenge and opportunities for anyone of any age. The staff had just the right mojo. I was blessed to be crew chief for Conner and his mom & dad, Mary and Dan. Wow, from the moment I met Conner, we hit the ground running. If it weren't for Huey joining our crew, I’m not sure I could have survived. Each day was full of adventure, laughter and a growing friendship. The opportunities that the families experienced that week were outstanding. I was fortunate to have my two brothers, Danny & Perry, and my sister, Paula, and her son, Jesse, there as well. That’s something special that we will all share for the rest of our lives.  My hope remains eternal that transverse myelitis will be cured and the quality of all the lives it has touched will be improved. A big enormous thank you to everyone who was a part of this awesome experience at Victory Junction Gang Camp!
Peace and Love,
Donna Bain

A week at Victory Junction Gang Camp; what a week!! It must be every child’s dream to be in such a place, filled with other happy kids where you can just play, play, play! And when you’re used to being the ‘not-so-normal-kid’ back home, it’s just great not having to think about your disability for almost a whole week!

The Danish Viking family wants to thank Kyle and Pattie Petty and the staff at VJGC for a great week this August. Adam has had TM since he was 1 year old, and as we don’t know of any other kids in Denmark with this diagnosis; it is almost unbelievable for him (and all of us) to meet other kids who have had the same disease. Our week with the other TM kids was well worth the long journey. Our counsellor, Cara, was wonderful, and the whole family enjoyed being spoiled by all the happy volunteers at the camp. We would also like to thank the TM specialists who were all extraordinarily friendly and good at explaining complicated matters. We left VJGC a whole lot cleverer and with a feeling of hope for the future.  A special thanks to Sandy, without whom none of us would probably have ever met!!

We hope to see you all again soon – hopefully at the VJGC!! (We felt sooooo good!!)
Magnus, Adam, Mette and Thomas Nybo, Denmark

The week we spent at Victory Junction with the Transverse Myelitis Families was beyond words.  The words “Thank you” do not say enough.  We are very grateful for this opportunity to explore your wonderful accessible camp filled with lots of fun things to do.  We loved the Nascar theme.  Our kids loved the “45” car and games inside.  Their smiles and laughter were captured in so many of our pictures.  We thank you! 

It was nice to meet so many wonderful families that live with TM.  Sharing one’s experience with others that truly understand means so much.  Children seeing that they are not alone.  Yes, there are others that live just like them is so important.  Even siblings had a chance to talk, listen, and share.  We thank you!

Wow, what an unbelievable staff and volunteers!  They were eager to please, always smiling, friendly, and helpful.    Molly and Bob helped the kids grow out of their shells and experience a great week at camp.  From singing and dancing to fishing and swimming.  We thank you!

Thank you also for giving us an opportunity to learn from the many physicians that was there.  There is so much to learn.  It was easy to do knowing that the children were having fun and not too far away in case they needed us.  We always want to make sure that we are doing everything possible to make sure that our children have the best life possible.  We thank you! 
 
Adam Petty, what a special person! To have a dream at a young age to build a place for children with special needs to have fun.  What an insightful person!  Wise beyond his years!

We are so very blessed for this opportunity.  Victory Junction is a little piece of heaven here on earth.  We thank you from the bottom of our hearts!
Yours truly,
Morgan and Pamela Hoge