Enduring Faith!

Last year at this time, my entire life was being turned upside down - my marriage of eleven years was falling apart and I was drowning in the fear of how I would raise four children on my own. What kept me from slipping into a depression or questioning Why me?

My faith in God, a wonderful support group of family and friends, and a young man named TJ Atchison got me through this major life crisis!!!

A few months earlier I sat by TJ's bedside at the Shepherd Center in Atlanta, reduced to tears by the circumstances of his spinal cord injury. For over three hours, I fought an emotional meltdown because I could not imagine this young man in a wheelchair for the rest of his life. How was he holding himself together so strong?

Even going through such a time of uncertainty, peace seemed almost unnatural considering the hugeness of what he was experiencing. He was not in denial. TJ was holding tight to a peace that could only come from God. He had witnessed years of God's work in his family - a grandfather who had danced with death more than once, and a young cousin living each day to its fullest after being diagnosed with cystic fibrosis.

Yes, life was certainly trying to wear me down, but after spending time with TJ and his incredible family, I was able to see that God would provide for and keep my family strong through everyday trials and tribulations. I'd seen firshand that "We also rejoice in our afflictions, because we know that affliction produces endurance." (Romans 5:3)

With many of us wondering what 2012 will bring, I want you to know that enduring faith can help you for when and not if life tries to wear you down. Read here to learn more about TJ's faith and his Whispers to Heaven:

 Best wishes for a happy, healthy, and blessed New Year, everyone!!!  Much Love, Tory

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Take Everything In Stride!

When news broke last Monday of Geron Corporation's decision to halt the world's first clinical trial using human embryonic stem cells, many in the stem cell community - patients, scientists, advocates - wondered how TJ Atchison would respond to the announcement.

Being the first to heroically and courageously volunteer for the trial, many feared TJ would be devastated and give up hope that a cure for his condition was possible. It was indeed a time of uncertainty for the twenty-two-year-old, considering he had been told the only reason the trial would be placed on hold was if a serious adverse event occurred with any of the patients injected with the cells.

However, in keeping with his belief that everything happens for a reason, TJ prayed this was a temporary setback, and felt certain another company would pick up where Geron had left off. "Once you've been through what I have (being paralyzed at the age of twenty-one), you can deal with just about anything - even the challenge of waiting for a clinical trial to resume," he stated. "I've learned to take everything in stride."

There are now five patients enrolled in the GRNOPC1 trial, the latest participant agreed to the procedure even knowing the biotech company would soon discontinue further developments of it's stem cell programs and focus solely on their novel cancer program.

Just two days before Geron's Press Release, TJ and Senator Marc Keahey (D-AL) met with close friend and patient advocate Roman Reed to discuss the importance of funding for spinal cord injury research in America. TJ knew if the treatment posed no safety risks to humans, then it must be funding that led to Geron's decision to halt the trial.

Without hesitation, TJ picked up his phone and dialed Roman's number - it was this moment when he took ownership of being the first human candidate for hESC therapy. He went from being a participant to becomming a leading patient advocate for stem cell research.

Nov. 19, 2011, TJ (first player from left) posing with his team, the Univ. of Southern Mississippi TLC Golden Eagles, in Gulfport, MS. The Golden Eagles defeated New Orleans with a final score of 43-38. 

After bouncing around ideas with Roman for over an hour, the two created a plan of partnership for raising awareness and funding for spinal cord injury research in America. For TJ's family and friends watching in the distance, it was remarkable to see him turn such a negative event into something extraordinaire. The confidence in his voice and determination in his eyes was stronger than we had ever seen before.

As I looked on, I couldn't help but think how incredibly strong TJ and his mission had become. Many of you reading will agree that stories of inspiration usually include a remarkable twist - a moment when the main character experiences a life-changing event and becomes a stronger person for it. For TJ Atchison, the events of November 14, 2011 certainly pushed him in a direction he never imagined.

Looking ahead to 2012, he is very excited to begin this new chapter in his life. He asks that you keep a close eye on Head in the Clouds, because your participation is necessary to make this a success!

In closing, I'd like to add that during this time of Thanksgiving, let's be thankful for all that we have - health, family, friends - and give of our time and energy to help the paralyzed back to health and on their feet in 2012.  Much love, Tory

Spreading the Stem Cell Message

Several weeks back when I visited Roman Reed, President and Founder of the Roman Reed Foundation in California, he mentioned that he would like to travel to Alabama to meet the world's first stem cell candidate, TJ Atchison, in person. Roman, a football player at heart, a patient advocate by calling, a political leader by choice, has spent over a decade of his life in a wheelchair, advocating on Capitol Hill for a human clinical trial of this nature to begin. So when I called him a week later and told him that TJ would be thrilled to meet him over Veteran's Day Holiday, Roman immediately made arrangements to travel over 2000 miles to Chatom, Alabama for a three-day visit with TJ and his family.

The closer it got to Roman's and TJ's special meeting, the advocate spirit of Roman came shining through when he asked if any state legislators might be interested in joining he and TJ for dinner one evening. Wherever Roman goes, he is never afraid or bashful to spread the word about stem cell therapy and how it can rid the world of disease and disability.    

The idea of introducing Roman to our representatives had already crossed my mind. In fact, Senator Marc Keahey (D-AL) and I had spoken on several occasions about the hot topic issue of embryonic stem cell research and the clinical trial in which TJ had participated in. 

Senator Keahey, a conservative Southern Baptist from Grove Hill, was very interested in learning more about the stem cells used in TJ's therapy. Being a ProLife supporter and father of three young children, he wanted to learn more in order to take a stance one way or the other on the controversial issue.

After coordinating dates and times between TJ, Senator Keahey and Roman, we determined a time and location to meet, and the rest is now history.

Last night, a small group of ten individuals including TJ Atchison, his mother and stepfather - Mr. and Mrs. Carey McDonald, Roman Reed, Senator Marc Keahey, myself, my mother - Glenda Armstrong, Mr. and Mrs. Wayne Blackwell, and Bonnie Blackwell, gathered for dinner at Casanova's Rendezvous in Chatom, Alabama to discuss stem cell research and ways to encourage funding in our state for this novel therapy.

From left: TJ Atchison, Roman Reed, Senator Marc Keahey, and myself enjoying conversation with one another before the rest of our group arrived.

Roman (center) with a warm smile on his face as he shares a photo with Senator Keahey of Gwendolyn Strong, 4-year-old SMA patient from California, who has inspired him to find a cure for other malfunctions and diseases of the central nervous system.

SMA is a terminal, degenerative genetic disease that impacts the voluntary muscles in infants and children, including the ability to walk, sit, stand, eat, breathe, and even swallow, while cognitive ability is never affected. Ninety percent of children born with SMA die before the age of two. One in every 40 people or nearly 175 Million globally unknowingly carry the gene responsible for SMA. There is currently no treatment or cure and although SMA research is underfunded, it is extremely advanced. For more information about Gwendolyn or SMA, please visit the Gwendolyn Strong Foundation website at http://thegsf.org/.

TJ explaining to Roman and Senator Keahey how he made the decision to participate in Geron's stem cell clinical trial.

From left: TJ Atchison, my mother and best proofreader in the world - Glenda Armstrong, Roman Reed and Senator Marc Keahey

Roman took time to explain recent advances in stem cell research and answered questions from Senator Keahey regarding the importance of federal funding for this unique therapy.   

Front row: Bonnie Blackwell, Roman Reed, TJ Atchison. Back row: Mr. and Mrs. Wayne Blackwell, myself, Anita and Carey McDonald.

From left: myself, Bonnie Blackwell, Roman Reed, TJ Atchison.

Three of my four children saying goodbye to Roman Reed before he made the trip back to California this morning. From left: Carlie, Roman, Conner and Courtney. 

Goodbye for now to a great friend and remarkable person, Roman Reed! 

Stem Cell Pioneers

Since the beginning of documenting TJ's story in November '10, I have prayed for the day when I could sit in a room with stem cell pioneer Dr. Hans Keirstead and Roman Reed of Roman's Law and ask questions about stem cell therapy and the science behind Geron's clinical trial . If only I could have an hour to speak with these men, I would say to myself while sitting at my computer until midnight, searching the public domain for any overlooked videos or articles mentioning their names.

Because I am abundantly optimistic and tenacious in spirit when it comes to something I feel passionate about, I convinced myself that everything would fall into place and that somehow, someway, TJ and I would have the opportunity to speak with Hans and Roman.

With the diligent help of our literary agent Mac Mackie, our prayers were answered, and TJ and I received an email from a major advocacy group, offering to put us in direct contact with anyone in the stem cell community that we desired to speak with. Of course we didn't hesitate one minute in responding to this generous offer. We went for it, and fast!

Fast forward two weeks later, I was heading home from work and just a few blocks from Courtney's preschool in Chatom - the one in which TJ's mother Anita is the director - I received a text stating that Hans Keirstead had agreed to participate in an interview if we were interested. It's almost hilarious looking back on it now at how I wheeled my Suburban into the daycare parking lot and ran inside to tell Anita the exciting news. It was moments like this, seeing the smile on her face, that fueled my efforts and made me work even harder on The Human Candidate.


And so the following week, with my itinerary folder in one hand and resource books tucked away in my carry-on bag, I departed Mobile Regional Airport en route to Santa Ana, California to meet and interview Dr. Hans Keirstead and Roman Reed. Of course this was a golden nugget opportunity for the research portion of TJ's story, but there was also a yearning to connect these amazing men to TJ. As the plane reached altitude above the clouds, and my nerves settled to their normal state, I looked out my window at the beautiful sunset and thanked God for allowing things to fall into place for TJ and his story.

I believe that pictures often times tell a story better than the written word, so please enjoy the images below that were taken during my trip to Irvine and Valencia, California!


I will always remember this visit with Hans Keirstead at the Sue and Bill Gross Research Center at University of California in Irvine. Hans is the brilliant neurobiologist who invented the protocol in which paralyzed rats were injected with human embryonic stem cells and later regained sensory and motor function at the site of injury level. His invention was patented and sold to Geron Corporation in Menlo Park, California for use in human clinical trials. TJ Atchison is the first spinal cord injury patient enrolled in this federally regulated clinical trial.


It was such an honor to meet and interview this incredible scientist, husband, father, advocate, and person of our time! Hans provided a tour of the research lab and took time to explain the science behind his invention. He exceeded all my expectations and made me feel most comfortable during my visit. For over two hours, Hans translated this complex science and terminology into simple, understandable information that will be conveyed in TJ's book.


Because TJ couldn't make the trip, he wanted to send a SPECIAL gift to Hans Keirstead's son Conner. As you can tell from his cheerful smile, the Crimson Tide is one of Han's favorite teams as well!

This moment, Hans Keirstead wearing TJ's autographed shirt, was priceless!!! Definitely worth making the trip to UC-Irvine.


The second day of my visit out West, I rented a car and travelled two hours north of Irvine to Magic Mountain Parkway, in Valencia, California. Roman Reed and I decided it would be fun and adventurous to meet at the home of Six Flags.


This amazing park made me miss my little ones back home even more.


Paralyzed after a football accident in 1994, Roman Reed has become a leading advocate on Capitol Hill for stem cell research. He and his father Don have worked tirelessly to have the Roman Reed Spinal Cord Injury Research Act passed in California. As a result, more than $12.5 million in state funds has been awarded to scientists conducting research in spinal cord regeneration. In the photo above, Roman was thrilled to receive his autographed T'shirt from TJ. It was such an honor to connect these amazing men.


Roman is such a nice guy with a HUGE personality and a heart the size of Texas!!!


So cool to introduce him via phone to TJ. These two hit it off immediately! Of course football, Bama beating Arkansas, was the topic of conversation! :-)


On the eve of Christopher Reeve's posthumous 59th birthday, and the one-year anniversary of TJ's automobile accident, Roman and I looked over our shoulders and noticed this beautiful tower - Superman! Can't think of a better way to end an amazing weekend with two extraordinary men.

The Hardest Part Is Saying Goodbye!

Here in this world, there are many beautiful, wonderful, and sometimes terrible things that happen. Some experience more or less of each, but for TJ Atchison, he has witnessed more life changing events in his twenty-two years than most people will see in a lifetime.

His car accident last September was a walloping blow - leaving him paralyzed from the waist down and a feeling of uncertainty for what the future would hold (*chapter snippet from THC below).

Then in October, becoming the first participant in Geron's stem cell clinical trial made him hopeful that life would not be as difficult as he once thought. This trial had become a huge part of his life, but it was not going to consume him. TJ quickly realized that God had a bigger plan for his future, and he was not going to question another minute of another day.


The children and I were able to spend some time with TJ and his family this morning before he headed back to college. It was heartwarming to witness the love and support shown from his family and friends - his roomate, Kyle Dees carried box after box to the car and reassured TJ's parents that he would take the very best care of their son.

As you can see in the photo above, TJ is not allowing his circumstances to keep him from reaching his goals. He is more determined than ever to return to the University of South Alabama Nursing School in Mobile, Ala. and complete his nursing degree. And his mother, Anita could not be happier for her oldest son. For months, she has devoted every hour of each day to TJ, waiting on his every need and making sure his spirits remained high. Certainly this is a difficult time for her to let go, but she sees the excitement in his face and knows this transition of returning to college is exactly what her son needs.

For those of you who know TJ Atchison well, I'm sure you will agree that he is one of those kids who knocks it out of the park each time he's up to bat. He never gets down or frustrated with being young and disabled. Instead, he has turned this negative experience into something astounding - a true testament of TJ's faith in God!

It is his goal to be an inspiration to young and old, which as you can tell by the smiling faces above, my little ones think TJ Atchison hung the moon! For thousands of other young and disabled, TJ hopes to show it is possible to live a normal, productive life, and that their dreams can be fulfilled with a little patience and determination. He believes that it's how you react to life's surprises that determine if you can hit the ball out of the park or simply strike out.

I must admit that when I gave TJ that final hug and said goodbye, my heart sank and eyes filled with warm tears. Just as his mother feels, I too am overwhelmed with happiness and joy for this young man, but the selfish part of me hates the afternoon visits and weekend get togethers will be very hard to come by.

Although the toughest part is saying goodbye to those you care for, it gives me great comfort to know that TJ will be much happier in school with his friends and moving closer to earning his nursing degree. And because I want nothing but the best for this young man, I was able to give him a warm hug and say the words, "Goodbye, TJ!"

When we left, my son Conner tapped me on the shoulder and informed me that when he grew up, he wanted to be just like TJ. I smiled and said, "That would make me very proud, Conner!"

In closing, TJ and I would like to announce that the book proposal for The Human Candidate is currently on submission with editors from across the country. Please keep us in your thoughts and prayers that in the coming weeks/months, we find the perfect match for his story and move closer to putting The Human Candidate on bookshelves across the world. Until next time, have a great one! Love, Tory

Upbeat Down South

There are three excuses for why I have not updated my blog in over a month: 1) Every spare minute away from a full-time job and the four cuties that call me mommy has been dedicated to helping TJ write his story, The Human Candidate. 2) TJ wanted to complete a full month of Beyond Therapy in order to share his experience and update you on his progress. 3) He wanted to announce his plans of returning to nursing school in the Fall - something TJ has looked forward to since his accident in September.

TJ and I interviewing his classmate and friend, Mary Lauren Bailey and his Professor, Joe Farmer at The University of South Alabama in Mobile. *Brooke Helms Photography, Mobile

Beyond Therapy
Since January - when Day Program at Shepherd Center came to an end, TJ hoped his application to Beyond Therapy would be accepted. Initiated in 2005, Beyond Therapy is yet another of Shepherd's boundary pushing programs. With facilities in Atlanta, GA and Franklin, TN, this rigorous program continually operates at full capacity - between 30 and 35 clients, each of whom receive some 9 to 15 hours of physical therapy a week. Yet with a perpetual waiting list of 50 names long, TJ knew it would be some time before getting in.

It was during his follow-up appointment at Shepherd Center in May that he learned a spot had opened for Beyond Therapy at the facility in Franklin, TN. Though it was a long way from Chatom - a little town in the pines of south Alabama, TJ knew he had potential to do more and wanted to keep going. Therefore, the following Monday, TJ, his mom, stepfather, teenage brother and 6-year-old sister made the seven hour trip to the hills of Tennessee.

Now, TJ had a "new goal to work on," to get better and stronger - both physically and emotionally.

His therapy began from the minute he arrived. In addition to Physical Therapy (PT) and Occupational Therapy (OT), he worked with specialists on strength-building and core exercises to help those muscles below the level of his injury recover and possibly demonstrate voluntary motor activity.

Milestones
Going to therapy week after week, TJ learned that teaching his upper body muscles to control his lower extremities was an exhausting ordeal. But he never once gave up. The gradual improvement day after day is what made it all worthwhile. "It was the little things like pedaling a bicycle for a few seconds on my own that made me push harder the next day," he explained.

A huge milestone that TJ remembers about Beyond Therapy is the day he was able to crawl on the floor - with quite a bit of assistance, true, but he was moving forward. "It sounds funny to say it, but it was so exciting to move forward without the use of my wheelchair."

TJ thinks that, eventually, when the stem cells have had a chance to work their magic, he will regain function of his lower extremities and walk again. In the meantime, he wants to focus on earning his nursing degree and share his experience with those who want to hear it. "Sure I want to walk again, but I am not going to let this consume me," he says. "I will continue doing what my therapy team has suggested and take care of myself. But I also want to help others who are beginning their journey as a disabled person. I want to show them that it is possible to live a full, happy life, regardless the circumstances or disability."

Advocate
Along with his studies, TJ wants to be a spokesperson for stem cell research. Based on all the available research and technology, he feels there is so much more that could be offered in medicine through the use of embryonic stem cell therapy.

Just in the past week, TJ has been reaching out to many people and organizations, and is excited to begin advocating for the science, hoping one day that he may even get the opportunity to address legislature and have his voice heard.

TJ, Mary Lauren and Joe.

He is upbeat about his future - both in returning to nursing school and being a voice for embryonic stem cell therapy. To learn more about TJ and the clinical trial he is participating in, click on the links below which include previous interviews and articles he has contributed to since revealing himself as THE HUMAN CANDIDATE:

http://abcnews.go.com/WNT/video/controversial-hope-13745331

http://www.washingtonpost.com/national/stem-cells-and-t-j-atchison/2011/04/15/AFoSkRjD_gallery.html#photo=1

http://www.technologyreview.com/biomedicine/37787/?mod=chthumb

http://www.technologyreview.com/biomedicine/37813/

http://www.wkrg.com/alabama/article/paralyzed-chatom-man-makes-medical-history/1207372/Jun-04-2011_12-10-pm/

Upcoming Interview!

It was an organized effort by many to select T.J. Atchison as the first spinal cord injury patient to participate in such a landmark clinical trial. When it was time for a decision to be made by T.J. and his family, little did they consider the procedure to be as monumental as it was. After all, T.J. was a mere nursing student at the University of South Alabama trying to make his final effort to become a college graduate. He had no intention or desire to become a famous person; his only wish was to walk again.

Film crews from ABC News traveled to the small town of Chatom, Alabama last week to interview T.J. about being the first spinal cord injury patient to be injected with human embryonic stem cells. In the photo above, T.J. and Cameron Waite act more like brothers than first cousins as they play a quick game of basketball.

ABC News Correspondent, Steve Osunsami, extends a hand to Anita McDonald as she reveals what it felt like to hear the devastating news of her son's accident.

Through it all, T.J. is not interested in being some sort of hero, but if he is presented with the opportunity to help his fellow man and future sufferers of degenerative medical conditions, he believes it is his religious and ethical obligation to be an advocate for this clinical trial—and the research behind it—that may just end up giving millions of disabled people the ability to live a normal, productive life.

Little sister Alyssa enjoyed spending the afternoon with T.J. as he interviewed with Steve Osunsami from ABC News.

T.J. enjoyed a few laughs with Steve Osunsami and the film crew from ABC News.

With no hesitation whatsoever, T.J. has asked for my help to co-author his story, The Human Candidate, in effort to share his identity and perception as being the first recipient of HES cells with the world. Not only is T.J. eager to be a spokesperson for stem cell research, he feels it is his lifelong mission to help other disabled people.

Please stay tuned to Head in the Clouds, as a date for T.J.'s ABC News interview will be announced soon. Much love, Tory