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Life after ALS? 



By Shelly Vaughn

     First of all I have to tell you that I believe that what I am dealing with is not ALS, but ALS type symptoms caused by a number of accumulated head traumas that I have experienced over the years going back to when I was five years old.  These traumas were caused by numerous car accidents that were fairly serious causing whiplash, concussions and hospital stays.  Not to mention numerous times that I got bucked off a green horse without a helmet.  I was a real Texas Cowgirl after all.

     Then in 2009 a runaway horse at a show kicked me so hard that I went five feet in the air and landed on my face six feet away from where I had been standing.  I had numerous fractures to my face and serious trauma to my neck.  After a lengthy recovery I was able to stand up, walk and work again training and showing horses, as well as run a riding academy and a program I called JoyRide to help emotionally challenged people and autistic children.

     In August of 2010 there was a study released by a group of American doctors where they believed they had discovered a link between head trauma and the development of ALS type symptoms. ESPN did a big special on this in which they questioned, did Lou Gehring really have ALS or head trauma from using his head to stop fast pitched hard balls?

     At the end of 2010 my ability to walk started to diminish and then I had to quit driving my truck which almost killed me.  In early 2011 I lost the ability to walk at all and now found myself in a wheelchair.  I went to a couple of doctors and was diagnosed with having ALS.  I did not believe that I had ALS and was referred to South Western Medical School which is one of the best in the country.  After some extensive tests and examinations I had six neurological specialists scratching their heads saying, “We do not know what is wrong with you”.

     I began to do my own online research to see if I could find some answers.  I scoured the net researching neurological diseases, orthopedic diseases and yes, even ALS.  Nothing really fit what I was dealing with.  As a result of me not fitting into a more popular and common ailment meant there was also no treatment available for me.  After talking to my personal doctor who prided himself on staying current with the latest research and new treatments we agreed that a stem cell treatment of some sort might provide help.  Then I began another round of research looking into all the various types of stem cell treatments available.  Numerous options were available using adult stem cells taken from Bone Marrow, umbilical cord, placenta, fat and such.  However when I looked further it seemed to me that these treatments were rather short lived in their effectiveness as the immune system of the patient would eventually kill off the introduced stem cells as they were foreign to the body of the recipient. 

     In reading through a lot of stem cell propaganda and possible scams I discovered a clinic in Kiev, the capitol of the Ukraine founded by a Dr. Alexander Smikodub who had pioneered and founded the world’s first fetal stem cell treatments back in 1994. Dr. Smikodub claimed that the fetal stem cells he used in his treatments taken from legally aborted fetuses from 5-9 weeks old would not be rejected by a recipient’s immune system.  The reason was that at this age these stem cells were very powerful yet they had not yet developed antigens.  If antigens were present as they are in adult stem cells they would be attacked and destroyed quite naturally by the body’s immune system.  I reviewed thoroughly his website in particular the testimonials contained inside.  It all appeared very, very good and I believed that I was onto a real deal that could help me.

     I spoke with my dear close friend Vicki Bennett, sent her the link and asked her what she thought?  After careful consideration she liked what she saw and said, “What the heck, I’ll call them”.  Now you should know that I do not believe in coincidence and that I most definitely believe in God and Divine Intervention.  Because when Vicki called in late May she did not get a machine, her call was answered by a fellow American, Joseph Maerzke, a “Cheese Head” from Wisconsin who was working overseas to assist Americans in making the trip to Kiev.  He told Vicki that he was a sort of Bridgeman and that it had taken his whole life to prepare him for the mission he now embraced.  Joe had spent almost 20 years working in Eastern Europe and could even speak pretty good Russian.  Joe assisted with the approval process for the clinic, as well as flight information and where to stay in Kiev.  A few months later in August Vicki and I joined a group of Americans making their own quests for healing to Kiev.

     My treatment was divided between two days visiting the clinic.  We were also able to meet Joe and had dinner with him at a Georgian restaurant where we had some delicious authentic food.   We went back to Texas and over the following months I had some slight improvements in my condition and most importantly, I did not get worse.  I got concerned about the continued build-up of fluids in my thighs and legs called edema.

     I tried several clinical procedures to relieve the edema with no success.  Then in March of 2012 I started doing pool therapy sessions twice a week in Dallas.  This took some doing as it involved an hour drive one way.  My sessions were limited to only 40 minutes because of a tight schedule at the pool with other patients.  Eight sessions a month later and I could notice a reduction of the edema.  I was so thankful that I had finally found something that could help.

     During the whole period since my return to Texas from Kiev I was in steady almost daily communication with Joe in Kiev via email and several calls per week checking on me and my condition.  Joe stayed true to his promise that he made to me in Kiev that our journey together had just begun and that he would stick with me.  Joe and I had made a connection as we both loved horses and children. Joe was the oldest of seven boys growing up on a dairy farm in Wisconsin.  He had numerous successes working for children. He told me that children were our future and that is why he had started a children’s design firm called Actimagination where his team created childrens properties that would inspire and activate a child’s imagination.  In 1989 he created the “Boys Toy of the Year” and became an International Children’s consultant where at a speaking engagement in Italy he was recruited to start Disney Publishing in Russia, Ukraine and the Baltics. From there he started the first “how to do it”, building, gardening and cooking show in Russia called “Let’s Live Wonderful”.  Over six years of broadcasting his show rated in the top ten of all shows produced in Russia with an average of 40 million Russian viewers.  He used the popularity of his show to help Russian Orphan Children.  The initiative was called, “The Little Golden Hearts of Russia” and after three years running they were helping 6,000 children live better.  Joe had plans to start a special children’s foundation and expand how many children they could help a year.  Then tragedy struck as his wife Galja was abducted, drugged, raped repeatedly and threatened with death.  After four days she was allowed to think she escaped.  When she returned home she was full of rage and Joe was not able to get her healing which resulted in a divorce and his home broken.  He was left with no choice but to leave Russia.  After trying to move back home it seemed to him that he did not fit.  He put together a marketing plan for the US Virgin Islands to promote tourism across Europe.  He created “Passport to Paradise” and was in the process of executing this when the economic crisis hit globally which ended up stranding him in Denmark.  He went through some tough times and experiences before being recruited to be a Bridgeman representing the pioneering treatments possible with the clinic of Dr. Alexander Smikodub.  He told me that he felt he could help a lot of fellow Americans who were ill, in particular children.  He shared with me some of the challenges and pains he had experienced over the years which prior to his new work he did not understand why.  He told me that now his “road of life” made sense to him and he felt that he was doing what he had been intended to do all along.  All of his past experiences, good and bad had prepared him for what he now felt called to do.  He worked long hours and slept little as he had a big job to do covering all the time zones of North America.  He use to surprise me with phone calls that I knew were made when it was 3 or 4am. in the morning his time.  I asked him if he ever slept which he would answer, “I get enough”.  Joe was consistently positive, supportive and with a good sense of humor.  We shared many a funny story or joke.

     When I told Joe about the alarming increasing cases of autism happening in America he was outraged.  He felt we were killing our future. I  believe that I actually inspired Joe to launch a special initiative to treat autistic children and to get a special discounted price for these treatments if done in groups of six at the clinic of Dr. Smikodub.  He got the clearance from the administration of the clinic and he and I both went to work forming groups.  He also found several American Doctors who were specialized in treating autism in ways not fully approved by the American Medical Association.  The AMA is on record for claiming that autism is not curable so no insurance benefits are allowed.  They also deny that the large number of vaccinations that American children now receive has anything to do with the increasing rate of autism.  Joe felt that if he could assist in establishing a real cooperation between pioneering American Doctors and the pioneering team of Dr. Smikodub’s that a cure might be found.  Starting in October of 2011 Joe and I had already formed four such groups and we were following the progress after treatment of about 24 children.  Every autistic child is different but overall we were getting results and parents were greatly encouraged as they could witness some real healing for their child.

     Joe and I did not just discuss autism and the children treated thus far. We had ongoing discussions concerning my return to Kiev for a second treatment as was advised by the doctors after my first visit.  It was recommended to come back within 10 -12 months.  The time was drawing close for my second treatment and I as well as Vicki were convinced that I was still alive because of my first treatment.  So I very much wanted to return.  I explained to Joe that my financial position was not good and this next trip to Kiev would probably be my last.  I told him this will be it; it is do or die time. 

     Joe went to work to insure that my 2 nd treatment and visit would be the very best it could be.  He worked with the doctors and it was decided that I would receive several treatments spread over 30 days.  That during this 30 day period Joe would also construct a special team to intensify my physical therapies.  The cost of these therapies in Kiev is one third the cost of the same here in Texas.  Can you imagine, one third the price? 

     It took some advance work to prepare for my arrival.  My condition requires 24/7 caretaking.  I cannot comfortably sleep in a normal bed so Joe designed and had made a special chair/bed that was adjustable and could also be used as a massage table.  He rented a deluxe wheelchair that was comfortable for me as well as adjustable.  He had to go outside of Kiev to find a van and driver that was affordable.  The van was modified so that I could be moved in my wheelchair accompanied by my caretakers.  We call it the Shelly Mobile.  He found a massage/physical therapist that would work with me four hours a day for the low sum of $50 per visit. Joe with the help of his assistant Dasha, were able to make a deal with a local sports club to use their pool every other day when the pool was closed to the public.  The pool also provided a professional therapist to assist with the sessions in the pool.  The pool did not have a wheelchair lift so Joe and Dasha came up with the idea of transferring me in and out of the pool in a special chair that they found.  Dasha was able to find a caretaker that could work with her to take care of me around the clock.  Dasha also found a lovely, affordable new apartment for me not far from where she and Joe both live on the Left Bank of Kiev.

     While Joe and Dasha were preparing all for my visit I was trying to find someone to go with me.  I cannot fly in economy class which forces me to use first class.  I have to be able to lay back and stretch a bit during the flight.  In the end none of my friends were able to make the trip over to Kiev with me so I decided to go by myself alone.  Joe stepped up again and contacted the station managers of KLM in Amsterdam where I would connect with my final flight to Kiev as well as the station manager at Borispol Airport in Kiev.  An attendant was waiting for me in Amsterdam with a wheelchair to assist me in moving to my connecting flight.  Then when I arrived in Kiev there was a whole medical team that brought me from the plane, through customs, got my bags and delivered me into the hands of Joe and the little army he had assembled to take care of me.  They all came to the airport to greet me.  I can tell you that I was truly glad to see them all and even more excited to get to the apartment to rest and recover from my long journey.  When we arrived at the apartment my first priority was to go potty which Dasha and Oxsana helped me to accomplish.  After that I was exhausted and hurting. I had six people hovering around me trying to make me feel comfortable.  It took a few days for Dasha to figure out what I needed and explain to the other caretaker Oxsana what I wanted.  Dasha speaks excellent English and Oxsana did not.  However it was cute as Oxsana started to learn English to talk to me and I started to learn Russian to talk to her.  We would have conversations in two languages with common words we both understood.

     During the initial week that I was in Kiev I received a special elite treatment from the clinic of Dr. Smikodub.  It was the most powerful treatment they could give me taken from very young material.  This material would take a bit longer to establish itself so it was good that I had already planned on spending a month.  It takes the stem cells some time to identify what parts of the body need repairing and then they take time to get to work growing posterity.  If you get a virus of some sort during this initial stage it greatly affects the impact the stem cells can make.  If they are busy fighting a virus they are not fixing me.

     I must admit that the care I was receiving was the best I ever experienced over the past three years in Texas.  I was being cared for with love and I felt safe and at home.  I was also kept very busy with four hour massage and physical therapy sessions daily; pool therapy sessions every other day for as long as I could handle and in-between Joe and Dasha would plan little adventures and excursions for me to experience Kiev.  They found things I could experience that also involved horses. We visited one of the finest stables in the Ukraine and had a lunch watching jumpers practicing. We also visited a Cossack Village; the Kiev Hippodrome for a day at the races; a reconstructed Ukrainian ancient village with a special medieval horse show and then I got to help Dasha with some riding lessons.

     After the first two weeks in Kiev my life-long friend Martha Traynor arrived in Kiev from San Francisco.  She has a husband and two sons and could not join me when I wanted to depart.  We had quite a time catching up as we had not seen each other face to face for 14 years.  She organized some girls night pajama parties and all three gals, Dasha, Oxsana and Martha slept in the same king size bed next to me in my chair/bed.  She also helped Joe organize a special celebration of America’s birthday that was held at a resort with a pool and an authentic 4 th of July menu. I had brought with me at Joe’s suggestion American Flag t-shirts and swim suits that I passed out as gifts to all of those taking care of me.  It was a glorious day and we all had a fantastic time and some shared memories that I will not forget.

     Life was good and I was having the adventure of a lifetime with some very special people that I had come to love because they were truly loving me.  I started to make some real progress and my pool therapy sessions which started out at about 40 minutes had increased to as much as 1 hour and 40 minutes per session.  My legs and thighs were now almost normal and I was getting stronger day by day.  My edema with a lot of hard work driven by some pretty tough trainers was almost gone.  I started walking on my own in the pool.  Often times when I was tired and about ready to call it a day Joe would remind me that a certain doctor had told me that I would never ride again, which motivated me to continue.  Other times Joe would sing in a loud voice a collection of his inspirational songs, like “This Little Light of Mine”, “The Battle Hymn of the Republic”, “Ride the Chariot”, “Zip a Dee Doo Dah” and the “Star Spangled Banner”.  I use to tell him to hush because he was making me laugh.  He responded, “Why not, we own the joint”.  We had access to this state of the art facility for at least four hours every other day for only $50 per session.  After my time in the pool the girls would use the special waterproof chair used to lift me into and out of the pool to give me a shower and wash my hair.

     All was going great and my little army as well as I felt that soon I would be walking again on land.  Joe had made sure that every one of the members of my little army was positive and committed to help me stand up on my own and WALK.  I was truly making real progress so I decided to extend my stay in Kiev indefinitely as I realized the level of care and therapies I was receiving I could not afford to duplicate in Texas.  I must tell you that came to love the Ukraine and its wonderful people.  I embraced the idea that I would return home to Texas walking on my own.  At the end of August I started having coughing fits in the morning that lasted up to three hours.  During these times I would also cough up a lot of flem that seemed to be increasing and affected my breathing.

     On Saturday the 28 th of August we went to Park Kievskiya Rus a reconstructed ancient Ukrainian village fortress.  Joe and Dasha had worked with the management of the park and given access to the Viking encampment where we could prepare several historic and authentic recipes over a fire and serve 20 re-enactors including us.  Actually Joe did this because I had been encouraging him to get his “Let’s Live Wonderful” show on Ukrainian television.  You could say that I dared him to do so.

     The day was beautiful and warm.  The park was packed as they also were holding the biggest festival of the year and more than 7,000 people were in attendance.  At least 1,000 of them in period costume including Joe.  The day was long and Joe could see that I was having some difficulties with coughing and spitting up flem.  We were in total at the Park for about nine hours.  Joe offered to have me taken back to the apartment.  I insisted on staying to see the final presentation of the meal.  As the sun was setting the meal was completed and it was like we had all gone back in time.  We had in costume at a long table for 20, Vikings, monks, a priest, a blacksmith, several Captains and some soldiers.  One of the captains was an opera singer and he had a wonderful tenor voice.  I do not know what he sang yet it was beautiful.  Then as we were preparing to leave the priest stepped up and introduced himself to me.  He asked if I wanted to pray and I agreed.  He knelt in front of me and we prayed together for healing.  We loaded up the team and our gear and headed home.  The drive took about an hour and I was ready for my bed.



Visit of Torres family and Baby Jesus

     At about 3am. Sunday morning I woke up Dasha and Oxsana because I was having difficulty breathing.  I kind of flipped out and had a panic attack which did not help.  Dasha tells me that I stopped breathing, my face turned blue, my eyes were bugging out as well as my tongue.  I was less than a minute away from dying as Dasha was doing everything that she could to revive me.  She is an amazing young woman.  Oxsana was overwhelmed and was useless but Dasha in spite of the emergency kept smiling and trying to revive me.  Somehow she knew that I was looking at her to see if I was going to die.  She claims she does not even remember what she did, but with seconds to live I started breathing again.  I believe possibly my guardian angel or hers stepped in and assisted.  You know I believe in Angels and that they are among us.  I believe that God has a reason for what I have endured thus far and in time it will all be revealed.  Otherwise I have had too many opportunities to not be here.  Yet here I am and here I remain fighting for my life, my dignity, a sense of well-being and the chance to pay back in some way all the people who have helped me get this far. In particular I owe everything to my dear and loving friend who I call my sister, Vicki Bennett.  Without her support over the past three years I would definitely not be above ground.  

     In my next letter I will tell you about my 42 days in intensive care at one of the finest medical centers in Europe.  Be ready for a new chapter in my journey to find healing and peace.

Visit of Torres family and Baby Jesus

Our Patients traveling from North America normally arrive on a Saturday afternoon where we greet them at the Airport and bring them to their fully furnished apartment. If requested we will make sure that food will be on hand as well. We recommend that our guests do not go to sleep immediately but stay awake at least until 8 or 9pm. Doing so helps insure a good night’s sleep to overcome the difference in time or what is commonly called jet lag. On Sunday we can have a little excursion or adventure. Something easy like a River Cruise, the Circus or simply a tour of Kiev followed with an early dinner at a local restaurant. Sunday evening should be easy and restful to be ready for visiting the Clinic Monday morning. Remember that those being treated cannot eat anything for breakfast until after blood and urine tests are conducted at the clinic. Complimentary breakfast will be provided for all after the samples are taken.

On Monday morning you will be picked up from your apartment by one of our patient driver/aide’s, Slava or Vadim. They will take you directly to the clinic and then wait for you to take you back. If on the way back to your apartment you would like to stop and buy groceries or anything they will assist you to do so. We aim to please to make sure you feel welcome, secure and safe. For your first visit to the clinic the first thing will be to take blood and urine samples. After that you can have some breakfast and then Dr. Smikodub Jr. and his team of Specialists will do a thorough pre-treatment exam. This exam is very important for the Doctors to make a final determination of the patient’s condition compared with the medical reports that were previously submitted and studied.

After the examination the team of Doctors will determine exactly what will be the best selection of fetal stem cell material to use for the first treatment. If at this time the Doctors feel that additional tests are required they will be scheduled immediately as the Clinic is located inside Kiev Municipal Hospital #4 which is one of the largest, oldest and best in Ukraine. Dr. Smikodub Jr. in his early days as a Surgeon practiced here and has many colleagues that respect and support his work to continue the legacy of his father Dr. Smikodub Sr. Once the Doctors make a conclusion as to which material they should use it will take about an hour or so to prepare. It is interesting but after 19 years and more than 7,000 treatments there has not been one patient exactly the same which has meant that no treatment here is exactly the same. Every patient is unique so that means every treatment is unique and special. Each treatment is administered individually for every patient to maximize the healing potential possible. Once the stem cell material to be used is selected it is administered very non-intrusively by means of a simple IV that takes 30 or 40 minutes. After this it is advised that the patient go back to their apartment and simply take a nap and rest for several hours. Now and for the next 7 days these new fetal stem cells will be traveling through the blood stream of the body seeking out where they are supposed to go and what damage they are required to repair. They are fetal stem cells that are between 5-9 weeks old and they have not yet developed antigens. This means that they will not be rejected or attacked by the patients’ natural immune system. They will be allowed to incorporate themselves with the body of the patient where they can grow and build the posterity required for healing.

After the first treatment we prefer if possible to allow at least 36 hours before administering the second and final phase of the treatment. This means that we might plan a little adventure or excursion for Tuesday. It will be your choice and we will present you with several options for you to choose if you like, maybe a visit to the War Memorial or the Dolphinarium. By the way the Dolphin show that they present here is the absolute finest and most exciting I have seen anywhere in the world. It should not be missed. The Torres family and Baby Jesus liked it so much we had to take them twice.

So on Wednesday morning you will return to the clinic for the second phase of the treatment. The Doctors once again will do an exam and then Dr. Smikodub will administer several injections of stem cell material just under the skin on the patients’ tummy. Again very non-intrusive and as you can see Baby Jesus with the hugest eyelashes we have ever seen, smiled and giggled during the whole procedure which took only a few minutes.

Once again after this treatment we ask our patients to return back to their apartment, rest and if possible take a nap for a few hours.

After the second part of the treatment is completed we advise our patients to remain with us for at least six or seven nights more. The reason is very simple. During this period it is very important, I repeat very important that the patient remain stress and virus free. Traveling is stressful, especially Internationally from here crossing Europe and the Atlantic Ocean as well as when you step on the plane you are walking into a target rich enclosed and contained environment where if there is a virus on board you have a good possibility of catching it. I have crossed the Atlantic at least 20 times in as many years. Half a dozen times I got on the plane normal and healthy and 12-20 hours later upon landing got off the plane sick as I had gotten a virus. I did my own little study and out of the first 40 North American patients I helped to come here, 2 out of 10 got a virus on the plane. Those 2 out of 10 did not initially make the progress with their stem cell treatment as did the others who did not contract a virus. So in my simple farm-boy logic I suggest that you just stay a bit longer here and we will make sure you have the adventure of a lifetime and go home healthy with many happy memories and new friends. If you stay an additional 7 nights you will also have the opportunity to visit the clinic a third time to personally meet withDr. Smikodub Jr. At that time he will be able to make a final exam as well as explain what you should expect and how important it will be for you to stay in touch with us so we can follow and monitor your progress. His personal assistant Natalia will work together with me to compile and maintain your own personal “Quest for Healing”. When you visit Dr. Smikodub Jr. for the third time during your first visit he has been known to also present you with a personal gift commemorative of your journey to Kiev. In the case of the Torres family it was a locally crafted artisan hand blown glass dolphin. Baby Jesus loved the dolphins and we all love Baby Jesus.