October 19, 2012 Hello! I just wanted to write a little report on how I feel and why the test results are pending. I feel really good both physically and mentally in addition to my Swedish doctors do not want to or cannot help me with my blood samples but I have not given up yet, I try with other doctors and hope for better help. I will be back with test results as soon as I can and until that I train and eat so right I can according to your wish. Best regards, R.W. November 12, 2012 Hello! I feel pretty good after the treatment. I have no pain in my legs since the treatment and my legs feel stronger and I am not that tired in the afternoon. It feels like it's easier to lift my left foot than before. I will get back to you with blood sample results as soon as possible–it’s not that easy to get them done in Sweden. I would like to announce that now 2 months after the treatment, I have improved in every way. I feel much stronger and less tired. But I have a problem with getting help to get follow-up blood tests in Sweden. So my curiosity is if I and my brother are the first MS sick Swedes who go through this treatment and unless we are first, my wonder is how other Swedes have done to get help with testing. Grateful for the response, best regards R.W.*
Thank you for the fantastic care you took of me and my husband while we were visiting your clinic. We felt very welcome. I feel pretty good after the treatment. I feel like it's easier to lift my right leg and both my legs feel stronger. Also my balance feels better. But I still feel a bit unsure of my stability. Overall I feel much happier and I have energy to do more of the training. Tomorrow I think about swimming if I still have the energy. I can walk longer without support now than before the treatment. My back pain disappeared, but I still feel a little week in my back. I will send you the blood samples as soon as possible. It's not so easy to get them here in Finland but I will try. Overall I feel stronger and happier. Greetings, B. B.*
The patient V. A. underwent a course of multiple sclerosis stem cell treatment. After returning home, he wrote us the following: Hello, Just after the arrival from the clinic, I stopped to pull my left leg. At present I walk more on my own. Weakness in the arms and legs has decreased, and my gait has become more confident. In early July, I noticed that I could see better and more clearly, and I'm able to recognize people I'm familiar with from afar. In the middle of July I was able to read. My vision has been improving each day. On July 20 I was able to swim a little, while earlier I was not. My appetite has improved. Yours, V. A.*
We would like to inform you that A. is great, she is progressing very nicely. She has gained the weight and reached 19 kg, she is eating alone, she can brush her teeth alone, so we are looking forward to her next therapy. We believe that she will be even better. Best regads from S. family from Belgrade.*
Dear all, First of all I would like to accept my apologize for late responding your mail concerning to my mothers health after the stem cells therapy which had been injected to her, I like to say: 1- After the 2 days of cure my mother was in excellent health as she was before that disease. 2- In the next month I mean after 21 days exactly she fall back specially in digestive process. 3- Nowadays she is better than before but still she is falling sometimes when she trys to stand up from stillness situation. Conclusion: she is really better than before and I will send you two comparing photos for her before and after the treatment. Thank you so much for your effort and we to help her again to get the 21 days first treatment which were the best duration life. Looking to hear from your side the best way to help us again. Regards*
Since R. was young, we had noticed him having difficulty with walking and climbing stairs. About two years ago, we took him to his regular physician for a complete smack test with blood work. One of these tests concerned the CK amount. We inquired about the results and we were told they were fine. About one year later we were concerned about his progress and consulted another doctor who referred us to the Muscular Dystrophy clinic, at which time they performed the same tests which revealed the elevated CK enzyme. Further DNA testing revealed the deletion of the dystrophin gene. From there, I requested the prior smack results which also revealed an extremely high CK, which revealed that the doctor did not read the results correctly. Therefore, lying to us that everything was ok. From there, we dive heavily into researching this disease and the devastating effect it has on the patients. We had traveled out to Memphis, Tennessee to look into a cell therapy procedure. Upon further investigation, we decided against this because of the makeup of the material being used and the way it was administered. From there, after more investigation, we traveled to Ohio to investigate a gene therapy procedure. We concluded that from the phase of this study, it was still in it's infancy. Fortunately, we have a limited knowledge of genealogy and what was required to repair the DNA. From all of the research we gathered, we believed that an fetal stem cell transplant could be salutary. After many hours we were lucky enough to contact your stem cell clinic where we developed a dialog with two very caring professors. We explained our situation and they believed they could help. Before our first visit, R. was on a fairly steady decline. Upon our arrival, we were greeted by a very friendly and knowledgeable man named Professor Karpenko. We had a very long conversation where he explained everything about the procedure, which was to be administered to our son. It sounded very promising and very unintrusive. The following day we began the treatments which included three IV treatments and approximately 8-10 myoblast injections. The procedure encompassed six days at the clinic. After the second day of treatments, we noticed a remission and improvement in our son's ability to bend his knees, run, sit up from the floor and also with his confidence level. This we attributed to him feeling stronger, which our son also conveyed to us. Also, his reflexes and respiratory functions improved. All within the time of the treatments. The Professors explained that, for approximately 10 days after the treatment, R. would experience a slight decline, which he did. After approximately 10 days, we noticed a steady increase, which leveled off and was stable for approximately 5 months. Within these months we had regularly taken our son to several doctors including a neurologist and a BIODEX muscle strength testing machine which is also employed by NASA and a pulmonary function doctor. They all have recorded absolutely no decline for about four months after treatment. During these months we noticed our son was moving much better. Prior to the treatment, our son had a waddling in his run and walk, which was dramatically reduced. These results are still present. Five months after the first treatment, we noticed a decline occurring which was explained to us by the Professors at the time of the first treatment. We were informed to make arrangements to return when the decline occurred. At this time, we returned to the Clinic for the second round of treatment, which were self-same like the first treatment. Also at this time, after the second day of treatments, we were amazed at our sons ability to do things he had not been capable of doing before. We have since returned about two weeks ago, and now we are observing a consistent increase in our sons ability. At this time, we would like to add that the treatment and the experience of traveling to the stem cell clinic and meeting the Professors have been very invigorating and pleasurable. We can really tell that the Professors heart and soul are in our son's treatment and we now refer to the Professors as our true friends. Their caring and dedication with our son has proved us beyond a doubt. It is really a shame that this procedure is not allowed to be performed in the United States. There are thousands of boys with Duchenne Muscular Dystrophy who could benefit from this treatment. As for our experiences, we have nothing but good to report to our friends and we look forward to the increasing strength of our son, which is he experiencing. We also thank God for meeting these people and giving us the strength and determination to overcome borders and stereotypes to seek help, wherever it may be. Myself and our families would strongly recommend this treatment with Duchenne Muscular Dystrophy. We would also like to add that it will be a much happier Christmas this year, than last. Thank you very much, The R. Family*
Pre-therapy condition: “Off” periods during the whole day. Marked difficulty in walking. Marked balance disturbances. Tremor in the right arm and leg. Severe stiffness in the right arm and leg muscles. Incontinence. Patient N., suffering from Parkinson's disease, was treated with stem cells. Immediately upon returning home he found positive changes in his condition as described below by his wife: “Stem cells is a miracle”, N. exclaimed. “Weakness in my leg is almost disappeared. I can freely turn around, I quietly go sideways what I could not do before! I could easily step over the suitcases; I am not awkward any more! Before the stem cell treatment, I had to watch my way and even couldn’t talk while I was walking, but on my way home after the stem cell treatment I could easily look about, and my balance was normal. I am not dragging my leg anymore.” I stopped my husband’s monologue and asked him to repeat it once again to write it down. So, we came home safe and sound. We took the metro without any problems. When we reached home, I fell asleep and when I woke up I heard and wrote down the above. Then N. told me he tried to walk on a treadmill (we had to purchase it some time ago for my husband to be able to exercise in any weather), and he managed to do it without holding on something as before when he had to hold on something beacause of his poor balance. Before the treatment he walked on a treadmill at the lowest speed but today he tried to increase the speed and he succeeded even without holding on something. Because of his tremor he could not take out or put the money into the wallet, but now he could easily do both. I even couldn’t understand what money and where he paid, but he explained that while I was sleeping, he realized that his mobile phone didn’t function and he had to recharge his account. He alone (and even without his walking stick) managed to reach the payment center (it is several bus stops plus long walking distance from our house, moreover, it was snowy and slippery in Moscow then). His improvements are so much evident that even if in the future he will experience some worsening you have warned us about we have enough arguments for the sceptics to assert that stem cell treatment is neither a “placebo effect” nor “injected vitamins”. Now N. is having rest and I decided to share our good news with you. We felt you are not indifferent to your patients’ problems as well as to their treatment results. We have never regretted for choosing your clinic. We are very grateful to all your staff for their affability, attention and kindness. Warmest wishes and regards, L.N.*
Dear Valentina, Things have been really good. O.'s OCD - obsessive compulsive behavior - and her anxiety has mostly disappeared. Her manual skills are improved, she is now independent pulling up her pants, putting on her shirt and almost independent putting on her socks. She has improved her skills when taking a shower, washing her hair, body, putting conditioner in her hair and so forth. She is much more interested in learning new skills and she is now trying to work on the things that are difficult for her. Before she had a hard time being introduced to things she needed to practice. Also her transitioning has improved, she is smoothly following along and moving on to new activities. Her self-damaging behavior has been decreased, she does not hit herself with the same intensity as before. She is much more calm and cooperative and her compliance has improved fantastic. She is learning new skills and improving very much every week. New sounds and better breathing and she has grown a lot. In short: it has been the best month in August in all 10 years I have being doing programs with O. I am so motivated to help her and do any program in contrast to before where it was quite tiresome to do program with O., because she sabotaged the program and was highly oppositional to all things that were introduced to her. Her prognosis for her heigth was before treatment with stem cells and growth hormone 135 cm. Now the prognosis is 150 cm. And the doctors expect she could get higher than that. About me: I´m so better, I have more energy, when I do running with O. I am able to do it without getting soar afterwards. I went trought a big court case in August and I was able to focus on O.’s training right after being in the court. So I feel I am better at controlling stress and getting it out of my system again. I also think I have less wrinkles on my face and not as deep as before. I look more alive and I feel more alive - and better at cooping with my challenges. Warmest regards to everybody from O. and M.*
We are all fine - thanks! L. is doing so well. Her spasticity in legs is decreasing. Her physiotherapist was amazed when checking her legs in August 2010. The quality of walking parents-assisted is improved – she is able to stand seconds longer than before – she seems straighter and more stabile when she is walking. When evaluated by the Belgium ABR team in August, they found her weight bearing in her shoulders when lying on the stomach has improved much more than was expected. Left arm is less rigid. Standing in her standing device has improved too – she can hold her trunk better now. Everybody tells us that her technique when crawling on hands and knees looks really better and more stabile. She is still falling a lot. Her bladder control is improving. For the past 4-5 years L. used 5-6 diapers daily. Now she uses 3, 2 diapers only per day since August 2010 – mostly at night. When she is tired it can still be difficult for her to hold until it is time to go to the bathroom. At night there is no change. Concerning her bowel she has mostly control of it but we do see an accident at night once or twice a month. The bowel control is same. We still see her fingers get white when it is a bit cold. Her Rayneaud syndrome is almost the same. Her energy level has increased – she has more stamina during the day. When evaluated at FHC she did her best ever. Her progress since January till July 24th was 115%!!!!! Her growth rate since 2003 has never been over 60%. She showed her intellectual ability very convincingly when speedreading 30 pages in 1 minute and then being able to put 5 sequences from the first chapter written on 5 pieces of paper in the right order without help at all. The book was written for adults. She showed her math skills in the same way and there is no doubt any longer how bright she is. Now she shows it. Before the stem cell treatment it was very difficult for her to show it in an unfamiliar environment. Her ability to communicate nonverbally increased – she uses more signs than before and does it faster. She trys harder to participate in dressing herself, locking/unlocking her wheelchair, drinking of a glass independently etc. We will have a blood test done in November and as soon we get the results we will send it to you. The physiotherapist will visit us November 25th. Then we will contact you again. We are looking so much forward to see what the stem cells will bring a year from now – it is amazing what has already happened. Best regards, L., J. and M.*
Below is a report on K.J. condition six months after the treatment at EmCell: Hi, Here is my response to your questions. I am also inquiring about K. future stem cell treatments. Thank you, E.J. In general he is feeling really good. Health is good. He has much more energy, but then when he sits idle, he starts getting sleepy. We are considering doing blood test for hypo-glycemia. Sometimes he has trouble sleeping thru the night. He is still taking Keppra 2 x per day for anti-seizure. He is also taking Baclofen 3 x per day for muscle relaxation. He has recently had Botox injections in his leg muscles in attempt to control his walking and gait. I will attempt to secure a copy on Kieran's medical report when we see his Dr. again on December 12. I will forward that to you. Also, we are considering traveling to Kiev again in early June, 2013. Thank you for your follow up on this. We are looking forward to hearing from you.*
15.10.12 Physical Examination: Max arrived to the Cell Therapy with his parents and grandparents. He came for the 2nd course of treatment. Max has grown up. According to the parents, evident improvements started 3 months ago. He can now walk with support, special device or pulling the cot. He puts full left foot on the floor at walking. Braces are often used too. When he walks, his head is bent down, and he raises it only for some time. He hasn’t learned to crawl. Autoagression has reduced, and reaction speed has increased, and he is now concerned about his safety. Two months after the treatment, his mother wrote us an e-mail: Hi! Max is doing very well in general health. He is making more progress in motoric and fine movement. I have noticed that lately he is more interested in toys, which he never was in the past. I hope he will make more improvement in the future. Thank you and best regards. M.*
Almost a year after the treatment, we received the following letter on A.F. condition: Hello, A. is very good after treatment, she has had great success in all areas. Her doctor tested her for two months and confirmed good results. The doctor was not aware of the treatment she received.The doctor was amazed at the progress. A. has a good appetite and good mood, is more social and more active as never has been. She takes more initiative and likes to keep herself fit by cycling, skiing and daily walks. She forgets little now and then, but I do not think this has accelerated. We both believe that the treatment was of great benefit and are gratefull for it and your professionalism. Sincerely, K. S. F.*
My dad is doing fine, he has put on some weight since stem cell transplants, overall looks very healthy, his colour is better as well. He did not develop any skin injuries in these past years which great comparing to other ALS patients in Cyprus. His main problem that arises very often is urine infections due to catheter and constipation. Spasticity is decreased remarkably which is also great as he is no longer in pain! So in general i would say he is in really good condition!*
Pre-therapy: Patient M. has really long history of muscular dystrophy. He underwent three courses of stem cell treatment, and this treatment had a big effect. Two months after the third course of the stem cell therapy, patient M. reported this: “I am writing 2 months after the treatment and want to inform you that my health is getting better, and there are signs that prove that I am recovering. I walk by myself for about 2 km, slowly, but without any help from another person, I feel more strength when I raise from the place I sit (I feel this strength without being visible for somebody else). I follow a daily recovery program based on walking, medical physical exercise and I had B1, B6, B12 injections last week. I hope the future news will be better so that you and I will be glad together. Best regards, M.” Three months after the treatment, patient M wrote: “I have continued the recovery program. After the treatment, my health condition had a positive progress, especially walking, where I sense more strength. When I get up, there are minor reactions based on a slight elasticity. I shall perform the neurological check-up at the end of the summer (approximately 6 months after the treatment). Best regards, M.” Five months after the treatment the patient wrote us the following: "Hello! 5 months have passed since the treatment at your clinic and I present a short report of my health in the present. The first months after the treatment, I have noticed visible signs of increasing of the muscular force, these signs were noticeable when I walked. I could also notice a better elasticity of the articulations during the movement. At the beginning of August I had time period when I felt the muscles being tired, even a slight exhaustion (when I rise from the place I sit). The sensation lasted approximately one week and after that I have turned back to the previous status. In the present the physical state is obviously much better than after the treatment. I noticed no positive changes when I climb the stairs. I have continued a recovery program (exercises, walking) and as the autumn starts, I would like to help my body, by taking a series of vitamins (injections). The vitamins are the following B1, B6, B12. I would be glad if you tell me how you think I should administrate the following period of time. Sincerely yours, M." Eight months after the stem cell therapy the patient wrote: “Hello! After almost 8 months from the treatment, I have performed a neurological exam where the improvement of my health could be noticeable, especially regarding the elasticity of my movements. I mention that I have started a daily kineto-terapheutical program for a month and that my body reacts positively. At the end of November I‘m gonna start the series of injectable vitamins, too (B1,2,6,12). Best regards, M.”*
Dear Colleagues, Since the stem cell treatment we have many different changes. All in all we are hopeful of a complete recovery for J. as he is showing us how much these stem cells have done for him so far. I am aware that it will take 3 to 4 months for the overall changes but so far it is amazing.
Also to let you know that the changes in little B. who came to see you in January are amazing, he has changed so much he is unrecognisable, he has started talking, and responding to the world very nicely. Eve has promised to get in touch with you as soon as she can. When people see what is happening to B. and J. they will be excited to visit your clinic to help their children. We cannot thank you enough for all you have done for J., there are no words to describe our gratitude only to say that we are in agreement with whatever you wish for us to do to make J. transition perfect for him. Thank you very much. I forgot to mention, that J. does not sleep as deeply as before, he's waking up a lot earlier and maybe going back to sleep again. Grateful Customer C.G.*
- He lives more in the present world, and listens to our conversation and laughs at the appropriate places.
- He is asking more questions about himself and the world around.
- He still has problems controlling his anger but not to the extent of what he used to be. Before he would break and destroy everything he could get his hands on. Now he may get cross but it is controlled and less violent. In this area as time goes on we are hoping to see great changes.
- He wants to try new things and gets excited about going to new places.
- He listens more follows the instructions.
- He will negotiate to stay up later at night or to do something else other than what we would suggest to him. He will say something like “can I stay up for another half an hour”, and if I say “no”, he will then ask if he can stay up for 15 minutes then etc. He will try to explore his options with words and no anger.
- He has grown around an inch taller, not sure if that has to do with stem cells.
- When he is reading he no longer struggles with number i.e. 500 he will automatically say five hundred while before he would say five zero zero. He can differentiate, zero, tens, hundreds, and thousands so he reads flows better.
- He will laugh when he is reading a story and it’s funny or the child is naughty, he gets involved in the storyline.
- All in all we can see changes in J. and we are excited and hopeful that he will be better and better.
- I’ve been following the diet and various other instructions from you without question.
G.is improving with her learning skills, concentration and speech and we are hoping to see more as she continues with the special needs help she receives at school. We are able to do some homework now which was not possible last year. Her speech is also improved with longer sentences and structures and proper responses when asked for information. We are hoping for further improvement in being able to give more information to us in speech. Her desire to read and school work has increased in the last 6 weeks at least, bearing in mind that the school year began at the start of February this year. The speech therapist has given positive feedback with her last 4 sessions in the area of participation and completion of the necessary skills that she is given. G. is now on the longer lasting (slow release) tablet of Ritalin 20mg in the morning which lasts for the school day and wears off when she comes home. Last year before the stem cell treatment G. was given 2 separate tablets of Ritalin 10mg each, one in the morning and the other midday which provided higher peaks in her response). This year, after treatment, the longer Ritalin tablet appears to be sufficient even though before the stem cell treatment it wasn't. There continues to be some side effects with the sleeping patterns as she is still alert by 10 pm at night. We do not give her Ritalin in the weekend or holidays. My hope is to eventually be able to take her off the Ritalin for school. I hope to provide more details with G.'s progress in the near future.*
My son took a suitcase yesterday and of course I have started a communication with him regarding his „trip” to Florida. I will write a short summary of my impressions and observations of his progress. I would like to highlight his increased intellectual abilities, he is focused, he will respond and understand everything that I ask him to do, assist me or if I insist on his patience and tolerance. He will no longer make sounds like an angry spoiled kid, because he is AWARE that he will get nothing before he verbalizes his need. Also he knows what situations can provoke that he gets grounded and he avoids them. He started to anticipate; he tries to behave and do things in order to satisfy his environment. His memory is improved; he has started to remember songs and singers; he is very explicit in choosing tv program, cartoons as well as music that he listens; and now he enjoys the wording of the song, he understands it. It’s not like before he was not able to understand but now he is interested in the scenario of music clip; he mentions and differ the emotions; he dance in a rhythm of a song (before, he was like a beast whenever I tried to show him how to dance), now he enjoys it. Communication with other kids in the kindergarten or in the park is really better, very articulate, again, with an anticipation. He gets to know the social rules, how you treat people you know and you don’t know; he is trying to be polite all the time (with all this phrases good afternoon, how are you, thank you), he can immediately answer what is his name and how old is he and how many brothers he has. He knew all this information before also, but it was somewhere deep in his mind and memory and usually it would take some time and effort to get it from him. He openly shows effort and willingness to participate and be useful, and to get all the best reactions from us. Generally, I feel much better and relaxed and I’m not afraid of some unpredicted reactions and situations. Honestly speaking, I was avoiding to spend time with him alone (prior to stem cells), always with the same reason what if he starts to “misbehave”…..No, not any more, I’m happy, I’m proud and I can pompously say that I have a special and very unique relationship with my son that I enjoy more than anything.*
Hello, It was a pleasure for my family to visit your clinic and get stem cells for my son. Today is two months from the treatment date. Everyone noticed that my son is different, he demonstrates more attention and eye contact. My son A. is more aware about his environment, he runs to his father when he is back home and shows how happy he is for dad. He starts to wear his slippers and also all the big shoes having fun. He can say a few new words like „mommy“, „eat“, „no“. A.’s behavior has also improved, he does not cry anymore. Thank you very much. My best regards to all your team.*
* We cannot guarantee specific results. The results may vary.