November 26th

Did Ashley enjoy the weekend at Notre Dame and St. Mary’s?

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This photo says it all. This is Ashley with Mom inside the Notre Dame football locker room. It was a wonderful day full of enjoyment.

We were in the locker room around 9:00am on game day. All the lockers had been outfitted with the game day uniforms. Given the temperature was in the teens we thought we might see garments with more insulating properties, but that wasn’t the case. The items that were in the ‘lockers’ (they were better described as shelved personal closets) were all placed exactly the same locker after locker. Each player’s name was displayed above. The home locker room is at the north end of the stadium immediately to the west of the tunnel. It is not your typical locker room given the carpet and the cabinetry. On the west wall is the ‘trophy’ case which contains, among other items, all 11 championship rings dating back to 1924.

Following our locker room tour we walked over to the bookstore. From there we went to LaFortune Hall, the student center.
Kelly had a room reserved and got word out to Ashley’s classmates to visit with us there. Several of Ashley’s class and dorm mates stopped by. This was certainly the highlight for Ashley.

We then bundled up for game time. Our tickets were right on the 50 yard line. We had a great time at the game; we wish we could say the same for the Fighting Irish.

Following the game we headed over to the Saint Mary's campus. We visited with Ashley's roommate Andrea before heading back to Fort Wayne.

It was a wonderful day that none of us will ever forget. Needless to say this all did not just happen. There were two wonderful people that made this dream day a reality. Kelly Hogan was a Notre Dame student sports manager with Ashley their freshman year. She teamed up with Mike Fletcher who is currently a sports manager. They both jumped through a lot of hoops and invested a lot of their time to put this agenda together and cover all the logistics and planning. We knew how wonderful Kelly was, but until we arrived on campus Saturday morning we had never met Mike before. He did not know Ashley, but was willing to take on this task for us. Mike you are our hero!

On the therapy front we reached a significant milestone last night. We have been patterning Ashley while she walks for several months. Often times we will have Ashley walk from the family room to her temporary room at the other side of the house; probably a good 50 feet. Well last night Ashley not only initiated every step she moved both feet forward EVERY time! It was unbelievable to watch. We were helping her with her balance, but we did not assist her for a single step. Exciting!

November 17th

Ashley had one of those week where she was improving in noticeable ways last week.

In therapy they do assisted walking with her (one person supports her while two others pattern her feet after Ashley initiates the step) and time how long it takes to cross the large room there. On Friday Ashley took a minute off her time. Her last timed walk before that... Just two days ago on Wednesday!

Ashley was featured in an article of Fort Wayne Living Magazine's November issue. It summarized the timeline of Ashley's treatment and progress and her on going efforts to recover from ADEM. There were several pictures of her at therapy and the story also spoke of the effort being undertaken by members of our parish to raise funds for a wheelchair accessible van for Ashley. Once I figure out how to post the article to the site I will get it up. The photos in this posting are from that article.

On Saturday Ashley tried out a motorized wheelchair in a gym. We weren't sure what, if anything, to expect especially since the joystick control was on the right side and Ashley favors her left. When we placed her right hand on the control she didn't move, but she reached her left hand over and pulled on her right so it did move. The net result was mostly in circles, but there was one time she was moving straight (keep in mind that we have this chair moving very slowly) toward a wall and moved the joystick to do a full 180 degree turn without any assistance. We plan on trying the chair again in the future to see how Ashley does.

On Sunday our church provided the Sacrament of the Anointing of the Sick. It was an emotional experience for Ashley, and us. We know that faith has been a major contributor to Ashley's recovery. The Sacrament helped us to reflect on all of the improvements Ashley has made in the last 16 months and we are thankful for that. We also have the continued hope that Ashley will continue to improve and reach a full recovery.

Ashley meet with her physiatrist (rehabilitation doctor) today and he was very pleased with Ashley's progress over the last several months. He thinks her therapy regimen is right on target.

We have big plans for this weekend. One of Ashley's college friends, Kelly, who was also a student sports manager with Ashley has made arrangements for us to go to the Notre Dame-Syracuse game. We will be touring the field and locker room prior to the game. We will also have an opportunity to meet with several of Ashley's classmates and friends while we are on campus Saturday. We are looking forward to it and are thankful for all the folks at Notre Dame that made this possible.

November 9th

One of the many activities Ashley took part in was archery. Here we are watching her take aim (with assistance) with a crossbow.

The Victory Junction Gang Camp Weekend was phenomenal.

We found out about the camp in July while Austin and I were at the Symposium on Neuro-autoimmune diseases. We saw a film about the week long camp that had been held for children with ADEM and Transverse Myelitis. We also had the pleasure of meeting the camp’s medical director, Dr. Peter Sim.

For a long time the Transverse Myelitis Association was looking for a camp that would accommodate the children with this family of autoimmune diseases. Often times its victims require a high level of medical care such as respirators. Camp after camp said they just did not have the facilities to accommodate the health issues that needed to be addressed. Sandy, the association’s president approached Dr. Sim of Victory Junction Gang Camp. Dr. Sim said he would talk to the camps founders, the Pettys.

Pattie Petty upon hearing the association’s dilemma simply said if no one else can accommodate these children than they must. Dr Sim and the association then went to work on making the dream a reality.

Now, on a rotating basis, each year there is either a children’s week long camp, or a young adults’ weekend.

You truly have to see it to believe it. Check that last sentence. You have to EXPERIENCE it to believe it. To say Victory Junction has state of the art facilities in a beautiful setting with staff and volunteers that love you like family and seem to know exactly what you need even though you didn’t realize it until were living it, is a monumental understatement.

Victory Junction is an adrenalin shot of faith, hope and love.

We were able to talk with other families face-to-face about the struggles and the accomplishments. We were able to converse with the doctors from Johns Hopkins and realize that, although this is a rare disease, there are strides being made. We had the pleasure of interacting with staff and volunteers who themselves were having a great time as well. We did everything as a family and we all participated; there were no boundaries at Victory Junction.

We have a new optimism that transcends where we were prior to this weekend. From day one in dealing with Ashley’s illness we have been surrounded with love, prayers and support. So this was not a revolutionary event for us. What it did was open our eyes to the fact that the blessings we were seeing in our efforts to battle this disease were not an isolated occurrence. There are so many people in this world that truly care, and are applying themselves in one way or another to make a difference. How refreshing!

Now that I have said Victory Junction is indescribable let me make an attempt to at least outline it for you.

Victory Junction opened in 2004. Its creation was the dream of Adam Petty. Adam, the son of Kyle Petty, grew up not only experiencing NASCAR first hand, but also philanthropy. In 1995 Kyle began his annual charity motorcycle rides across America. The proceeds were given to children’s hospitals. Adam Petty was inspired to create a camp where children with chronic illnesses could come and literally take a break from the trials and tribulation of daily life with a debilitating disease.

Adam died during a NASCAR practice in 2000. His parents Kyle and Pattie carried on his wishes for the camp by consulting with Paul Newman’s Hole in the Wall Gang Camps.

Up to 128 children campers can be accommodated at a time in week long summer camps. During the spring, fall and winter there are teen/young adult family weekends. All of the costs including transportation are covered by the camp. You can learn more about the camp and support it at www.victoryjunction.org.

The prospect of flying with Ashley’s wheelchair (with connecting flights that had tight layovers) and having to carry on her medicines and liquid nutrition (45 ounces of nutrition is slightly over the 3 ounces the Transportation Security Administration allows) were concerning. It turned out to be no problem. We had a letter from Ashley’s doctor explaining the circumstances. Her carry on went through additional security screening, but it did not hold us up. The airline (US Air) was very accommodating for Ashley and us. We boarded first leaving Ashley’s chair at the plane’s door and got Ashley on board with a chair that fits up those small isles. Ashley’s chair was the last item to go into the luggage hold and the first thing off. When we got off the plane her chair was right at the plane’s door so she could be transferred. We had no problem making our connecting flights.

From the Greensboro airport we joined other campers aboard a Victory Junction bus for the 20 minute drive to the camp. We arrived early so we had an opportunity to walk around the large campus and begin to acclimate ourselves to the layout.

We were housed in one of the 16 cabins the are split into two independent units.
Our dorm style bedroom had eight twin beds designed like race cars. At the foot of each bed was a locker and next to each bed was a shelf designed like a gas pump. Our cabin was Kansas (each is named for a NASCAR track).

At each meal (at the caféteria called the Fuel Stop) we met with the other campers and in addition to eating we sang and danced after every meal, including breakfast (they know how to get you going)!

We then set off on scheduled activities with our crew chiefs (college volunteers). Our crew chiefs were Katie who was from Charlotte and had worked at the camp during the summer and Matt who drove in from Auburn University in Alabama. This was his first time at the camp.

Katie and Matt were wonderful. Not only were they helpful, they were truly fun to be with. Matt and Austin hit it off talking sports and playing Wii and bowling. Katie had experience with the camp and was our inside resource making sure we maximized the benefits the camp had to offer.

The activities we took advantage of included bowling, horseback riding, miniature golf and scrap booking. Ashley participated in each one of these activities because Victory Junction is designed for people with disabilities. That helped us to recognize that we have a lot of paradigms we need to over come. Ashley truly enjoyed these things that she had not done since being stricken with ADEM 16 months ago. We need to continue to place an increasing spectrum of stimulating experiences in Ashley’s calendar.

There was an informative session by the doctors from Johns Hopkins and a therapist from Kennedy Krieger. They shared with us the latest advances in treating demyelinating diseases and therapy techniques. Later when we spoke with Dr. Kerr (he has seen more cases of ADEM and Transverse Myelitis than any other doctor) he stated that each ADEM patient is different, but aggressive rehabilitation can work wonders. He told us of an 18 year old girl that had ADEM. After two and a half years he didn’t think her progress to that point indicated that she would ever lead an independent life. After five years he was attending her wedding and she was in college. With Ashley’s continued determination and all the prayers she has supporting her we are confident that she will reach a full recovery.

The most treasured moments were talking with the other individuals and families that were living lives just like us when suddenly it all changed. We each shared our stories of what we experienced, both good and bad, but in the end we were smiling with each other and thankful for the new friendships we created.

We have so many to thank. Sandy and the Transverse Myelitis Association for seeking out this opportunity. Dr. Sim for approving our application and creating such a wonderful environment at the camp. Katie and Matt our crew chiefs for being both wonderful guides and friends. Dr. Kerr for all he is doing to fight this disease and help its victims maximize their recoveries. Chris our camp
recruiter that made all our arrangements for us. The staff and volunteers at the camp that have hearts of gold. The NASCAR drivers and every person that has contributed to the camp. Most especially we want to thank Kyle, Pattie and the rest of the Petty family for following through on Adam’s dream. You have made our dreams come true!