Max and Filipa
Dear all.
We have been back from LA for a month now and we wanted to update everyone.
We are not sure who has had what updates so we are starting at the beginning.
You have all been so patient and we thank you for this.
Max and Filipa
This is the second update – sent just after we got home:
We are now back from LA. Jet-lagged but happy.
Filipa and I both feel that Jaspar is showing signs of changes.
He seems less spastic and more cognitive, present.
We both know that these are early days but these small changes are so impressive when we have gone so long without change.
He seems to have more control over his arms and hands and now holds his arms in when we go through doors.
Prior to this he would shoot his hands out to the sides when going through restricted spaces – a reaction caused by him wanting to pull his arms in, and this then triggers the spastic response and his arms fling out. It will be interesting to see how he is once he is rested.
Dr. Steenblock says that the stem cells really start to impact once they start setting up their own blood supply -
they attach to the injury site and then grow a blood supply etc. This is stage 2 and should be happening around now.
We have been told that he must rest and not be bumped around in the next few days as this could damage the new arterioles forming.
Lucky guy gets to rest and have some more days off school.
Max & Filipa
The latest update as of 16 Feb 2012:
We have continued to notice small changes.
Jaspar now has warm feet – before the treatment his feet were always freezing cold.
He asked us to cool his hands and feet off a few weeks back which was so strange.
He seems to be growing in confidence and those who are closely involved with him have noticed a change in his level of awareness.
He still does not like maths and is passionate about cars – some things will never change.
He also seems to be eating better and his school told us that he managed to suck from a straw which is very significant as it means he may have gained more oral control.
They are small changes but significant in terms of his CP.
We have tried not to put any pressure on Jaspar – as in asking him if he feels different/better etc.
We would like to take this opportunity to thank each and every one of you for your kind words, emails, texts and love.
The journey has started – where it ends we just don’t know.
Max, Filipa, Jaspar.
London Feb 2012
Update 24/2/11
Jaspar continues to show cognitive changes.
He now uses his MyTobii eye control computer with consummate ease.
It is as if he suddenly gets it and is interested.
He is writing full sentences and interacting with all of us.
His cheekiness has doubled and he has grown in stature.
What a joy!
Max Tomlinson ND
Salutations Dr. Steenblock!
You suggested maybe a month or two ago I write you to inquire about new methods or treatments for administering stem cells… So here we are…
Savanna definitely responded this past october to treatment.. I believe she got physically stronger and more relaxed all over…
Kaylee is gaining lots of weight and her head circumference has grown, which was always below the lowest average on the growth chart, jumped up to within just below average but now with in range.. Effectively jumping up 2-3 points, of course I think this due to her gaining lots of weight and height, as well she talks all the time now. We haven’t done any hyperbarics with her and no other physio so I can’t attribute it to anything but stem cell.
So we would, be excited to come back again for further treatment. And of course any info on how you might administer it? Or any other new info.
My friend Javier from my cp parent organization and his son Kevin said they were down to see you… And he is considering going again… So glad their working with you 
Thank you!
Best,
Nicole M.
Hello Dr. Steenblock, Dr. Lacroix and George
I have some amazing news about L.C. On July 12th we took her to her eye specialist, he ran several test including a prevoked potential eye test and L.C. has 95% functional vision in her right eye! She started at less than 18% prior to stem cell treatments we did in May. Also L.C.’s brain is responding to the signal from a 5-15 second time frame. L.C. prior to stem cells was diagnosed as visually blind, now she can see us and the wonderful world around her. She did have some minor improvements in her left eye but still the signal is not connecting. On July 22nd we met with our physical therapist and she noted that L.C. has stronger trunk control, better head control and is using both her hands now. Also the degree of motion in her legs has improved from 125o to 1348o so that is all exciting to us. We look forward to seeing you again soon and hope that one day your research will be approved in the United States as the miracle it is.
God Bless!
C.S. – Cerebral Palsy
Dr. Ramirez often treats severe cases of cerebral palsy. C.S. is one of these children. With about 40% of his brain damaged, the physicians were doubtful if C.S. would respond to the treatment. The parents wanted to try anyway. This was their last hope. A catheter procedure was done so that the cord stem cells could be placed directly in the damaged area of the brain. Within two months, the seizures had significantly decreased. C.S. is now stronger, more alert and he is talking more.
D.B. – Cerebral Palsy
DB was severely underweight. Since her stem cell treatment, she has been gaining enough weight to now be in the normal range for her age and height. She is opening her hands more and able to play with the toys and turn pages. Her head and trunk control are much better and she can sit on her own now. She is more aware of the world around her and participates more with friends and family.
• The Ramirez human umbilical-cord stem-cell therapy program in Mexico has treated more than forty children with cerebral palsy since March 2003. Eighty-five percent of these children have experienced significant improvements in motor skills and cognitive functions. In one case, a four-year-old boy was cortically blind (a lack of visual functioning despite structurally intact eyes), could not speak well, and could not get around well prior to therapy with hUCSCs. Within seven months of therapy, however, he was able to track objects with his eyes, was beginning to speak, and could move around more ably.
Jordan Logan – Cerebral Palsy
a four-year-old girl, with a terminal genetically based neurological disease called “metachromatic leukodystrophy” (MLD) was treated with 1.5 million hUCSCs. MLD is caused partly by a genetic defect in which a gene critical to the production of an enzyme called “arylsulfatase A” (ARS-A) is missing or not functioning properly. This enzyme makes it possible for a person’s body to deal with toxic molecules that we all generate called “sulfatides.” Chil- dren and adults who do not produce ARS-A or very little experience declines in their neurological function that culminate in disability and death. In children with advanced cases of MLD, improvements in neurological function are never seen and death typically occurs by age five. Prior to the treatment, the girl was cortically blind, her body was limp, and she was on a host of medications. Within two months of her hUCSC injection, however, she could track objects with her eyes and lift her arms and legs high in the air. Eventually, two of the three medications she was on were discontinued.
In late August 2005, the Logan’s two-story home in Pass Christian, Mississippi, was flooded and severely damaged by the passage of Hurricane Katrina, a category 4 hurricane. Fortunately, Jordan and her mother, Charlotte, had evacuated to a relative’s house in Alabama well before the hurricane hit their community. While all this was going on scientists at a medical school lab had succeeded in inserting a human gene for the ARS-A enzyme into hUCSCs and by doing so had turned them into little factors that produce and excrete the ARS-A enzyme. This approach was first suggested by coauthor Dr. Payne to the medical school researchers who produce hUCSCs that are utilized by Drs. Fernando Ramirez and Frank Morales in Mexico. These scientists then went on to create a ARS-A transvected cell line using the highest quality control testing standards followed by careful experimentation involving lab animals. This phase was pretty much complete by late September 2005.
On October 4, 2005, Jordan Logan and her mother were flown to Brownsville, Texas, in a private jet whose use had been donated by a kindhearted, generous businessman named Jim Tatum of Fairhope, Alabama. The following day the Logan’s and their pilot made their way to Dr. Frank Morales’s clinic in Matamoras, Mexico, where Jordan received 1.5 million of the ARS-A producing hUCSCs. (The cells and Dr. Morales’s clinical services were all donated as well.) In the weeks since that historic treatment, Jordan has displayed physical energy and neurological responses not seen since she was an infant. For one thing, she is now turning her head toward people who call out her name. According to Charlotte, this is actually something Jordan has not ever done. She is also now off all medications. And as this book goes to press, tests are to be done shortly that will verify whether the ARS-A enzyme is now showing up in Jordan’s blood. Prior tests have shown 0 percent of the enzyme.
Jordan’s story has appeared in numerous regional and national newspapers, and has also been the focus of TV coverage in Mississippi. Charlotte is now getting almost daily phone calls from parents of MLD-stricken children residing not only in the United States, but also in many foreign countries such as Canada, England, and Spain. If Jordan Logan continues to improve, virtually all of them plan on going to Mexico to have their ailing children treated with hUCSCs bearing the ARS-A gene.
Emily – Cerebral Palsy
Emily entered this world in a state of profound oxygen deprivation known in medical parlance as “anoxia,” a condition that lasted twenty- eight minutes. As a result of this, she was saddled with profound developmental delays and visual problems and was quickly classified as having cerebral palsy. As she grew older, the extent of her disabilities became painfully evident: She could barely communicate in a way that anyone but her family and therapists could readily understand, she could not count, she was unable to feed herself or walk, and she developed little in the way of a personality. As a result, her five sisters and brothers avoided interacting with her.
In the years that followed, Emily underwent a barrage of therapy in the United States and abroad, which produced modest improvements in her speech and in some aspects of her body movements— though nothing impressive. Among the few seemingly effective treatments were a lengthy series of hyperbaric oxygen treatments (HBOT) and a course of therapy in Poland involving a special rehabilitation apparatus called the “Adeli suit.” (This suit is a spin-off of the old Soviet space program; it helps CP patients experience normal posture and movements, patterns that the brain retains as a sort of standard to strive for.)
Emily’s parents doggedly investigated and utilized any treatment or regimen that seemed effective. This quest for new avenues led them into the world of stem-cell therapy in 2002. Following lengthy discussions with researchers at Steenblock Research Institute, Emily’s parents decided to have her treated with umbilical-cord stem cells abroad. This took place in November 2002.
During the course of the six months that followed, Emily experienced significant improvements in her ability to focus, concentrate, and speak. Her vocabulary expanded dramatically so that she could readily make complex sentences. And her speech patterns improved so much that strangers could understand her. She also developed a greater ability to hold objects such as a crayon than she had prior to stem-cell therapy; and she could also draw a line, count to twenty-four, feed her- self, and even make jokes and interact with her siblings.
The kind and degree of positive change in Emily was so striking that her therapists and doctors argued in favor of a second stem-cell treatment. She had this treatment in November 2003, and in the months since that time, Emily has made additional gains in her ability to walk, speak, and interact with her family and others. Additional stem-cell treatments took place in 2004, and at last report, Emily was getting about using a walker and doing well in her schoolwork.
The Baby S Story – Cerebral Palsy
Baby S entered the world healthy, wide-awake, and full of vim and vigor. This happy beginning was quickly turned on its head only a few months later when he had a severe stroke that resulted in his being classified by his doctors as having cerebral palsy. The cause? The neurosurgeons, perinatologists, and pediatricians who were called in to determine the “why” behind Baby S’s misfortune came up with no answers. Their puzzlement was compounded by the challenge of dealing with a baby who once smiled and reached for toys in his crib, but who was now like a limp rag doll, struggling with medical complications and developmental blocks.
For Baby S, any sound—like a refrigerator door closing or someone sneezing—would cause him to cry inconsolably for twenty minutes or more. The developmental blocks meant that the primitive reflexes that would typically be seen only in newborns would be his lot day in and day out. For example, when startled, Baby S’s head would jerk far to the side, and his whole body would stiffen up.
Baby S’s primitive reflex problems were complicated by the fact that his head turned to the side automatically and that one arm would shoot out in what is known among experts as “asymmetrical tonic neck response (ATNR) reflex.” In a word, Baby S was like a prisoner trapped in a brain-injured body; a prisoner who could not even recognize the presence of the many, festive baby toys that friends and family had set up about his crib.
At six months, Baby S still lacked head control. His fingers were curled tightly around his thumbs, his toes were rigid, and his arms had begun to stiffen up and rotate inward. His legs were basically motionless, and when he cried, his back arched into an upside down “U” shape. Baby S’s eyes didn’t focus or move well together, and when he was placed on the floor, he would scream out like someone emerging from a very bad dream. His mobility level was estimated to be that of a two- to three-month-old baby—or less.
At one pediatric neurology appointment, Mrs. S. could hear doc- tors in another room discussing the infant’s latest MRI scan results. They were amazed at the amount of damage and exchanged comments such as: “Wow, look at the holes in this kid’s brain.” Shortly thereafter, Baby S’s neurologist came into the exam room and told Mrs. S. there wasn’t any hope for her baby to ever be much more than “a vegetable” and that he would require special care for the rest of his life (which might be a short one, given the fact that children this severely disabled are at risk for developing life-threatening complications, such as pneumonia).
Mrs. S. and her husband shared a deep, abiding inner conviction that the neurologist’s grave pronouncements were not going to prove prophetic when it came to Baby S, and they promptly sought further medical opinions. A pediatric neurologist on staff at a children’s hospital in Utah disagreed with the first diagnosis, stating that the plasticity of the infant’s brain might help bring about slow improvements. A pediatric neurosurgeon at a medical school in Oregon agreed.
The Ss focused on seeking out research studies, findings, and even ideas that looked promising for stroke rehabilitation. They also enlisted every therapy service available to them through their state services “Birth to Three Program.”
Life became a litany of therapists. The Ss watched as their baby struggled through evaluation after evaluation, typically ending with their being reminded not to expect much for him, save a future of severe seizures and the remote possibility that he might one day be able to interface with the world through technology (computers).
The Ss were determined not to let naysayers have the last word. They fired every therapist who said that Baby S was beyond hope or who treated him like a brainless object that just happened to have arms and legs. Finally the Ss found a “neurodevelopmentalist” with over thirty- five years of experience and special training in brain injury rehabilitation therapy. This doctor’s philosophy—that injured brains could be coaxed into adapting to the injuries and making new connections— made sense. But to do this would take a dedicated team of healers and a lot of determination.
The Ss organized a hand-picked therapy team of doctors and therapists who were highly trained, motivated, and adept at treating brain injury victims. Each team member had to have a specific set of cardinal traits: Hope and open-mindedness. They also had to have experience with helping pediatric stroke patients overcome the odds.
The team of therapists that emerged used their time and expertise artfully to treat Baby S, whom they treated as a person who deserved respect and who they expected would show developmental progress. The immediate therapeutic goal was to maintain Baby’s full range of motion, avoid contractures, and give his brain a chance to heal and recruit as much as it could using integrative treatment approaches.
Baby S’s neuromuscular skeletal surgeon worked to address the neuromuscular skeletal issues associated with a body that doesn’t move on its own, and proved to be a very open-minded advisor concerning all aspects of Baby’s therapy. With her help, the therapy team steered the Ss toward hyperbaric oxygen therapy (HBOT).
HBOT involves placing a person into a chamber where oxygen is pumped in under pressure. Most HBOT center treatments use pressures that are the equivalent to that of about thirty feet below the ocean surface. In the case of babies, mother and child do the treatments together. HBOT proved a godsend for Baby S: After about fifty treatments (called “dives”), his eyes began to work better, he was able to move his toes a little, and his weak appetite dissipated entirely. Unfortunately, money ran out for more HBOT and the S’s fund-raising efforts failed. On the plus side, Baby S never lost any of the progress attained from the course of dives.
After two more intensive years of therapy, including occupational therapy, physical therapy, and speech therapy, the Ss had fulfilled one of their early goals: for Baby S to have a full range of motion without resorting to surgeries, castings, or other prosthetics. This inch-by-inch progress was sufficient to keep the Ss motivated.
Over time, Baby S held his head steadier, and his response to unexpected noises was to cry for only five minutes, rather than twenty-plus minutes, as previously. Clearly, Baby S had overcome the primitive startle reflex and ATNR reflex. And though progress was painstakingly slow, the Ss were seeing the emergence in their son of a happy, sweet personality. He was getting steadily better at recognizing his surrounding environment and was showing an outgoing, playful disposition. Word spread, and in time, many volunteers from the S’s church began coming by each day to help the Ss with Baby’s prescribed home therapy exercises.
As encouraged as everyone who knew Baby S was by his progress, it was evident that it was happening at a snail’s pace. Most alarming was the fact that Baby S’s weight had stopped increasing. Because Baby S could not chew, the Ss were faced with the possibility that a GI tube would have to be inserted in order to give their baby enough nourishment to keep him alive.
The Ss wanted to try HBOT again, as they knew of so many children who were having fabulous results with it. While contemplating where to go for HBOT, they heard about David Steenblock. The Ss contacted Dr. Steenblock right away and were told that he would do HBOT on Baby S at a reasonable cost. After successfully checking out Dr. Steenblock’s background and credentials with Baby S’s surgeon, and consulting the MUMs National Parent-to-Parent Network (www.netnet.net/mums/) and other doctors all across the United States, they learned that Dr. Steenblock was an outstanding physician who was knowledgeable, kind, and on the cutting edge of stroke rehabilitation. Buoyed up by with these glowing recommendations, the Ss made an appointment for Baby S.
While performing an exam on Baby S, Dr. Steenblock shared information and research findings concerning the promise of umbilical-cord blood stem-cell therapy for stroke and other diseases. This rang positive for the Ss, as they had been reading about stem cells and stem-cell research intensely during the year preceding their visit with Dr. Steenblock. As Mrs. S. puts it, “Consulting with doctors at government research centers and other parts of the world via phone and e-mail had become our pastime.”
This body of research raised all kinds of questions in the S’s minds: Would umbilical-cord stem cells cause cancer like some embryonic stem cells had in lab experiments? Would they do any damage? Dr. Steenblock patiently and carefully laid out the long history of effective use of cord blood to treat leukemia and other disease in adults and children. He also pointed out that treatment with this stem-cell-rich blood had not spawned tumors or other dire illnesses in those treated. And, of course, there were no ethical issues as umbilical-cord stem cells are extracted from placental blood. No embryos or aborted fetuses are involved, which was a major issue for the religious S family.
The research presented by Dr. Steenblock, in concert with that amassed by the Ss on their own, suggested that Baby S might benefit from treatment with pure umbilical-cord stem cells. After considerable prayer and thought, the Ss decided this was Baby S’s window of opportunity for improvement. But even if he did not improve, everything they had read and heard indicated Baby S would be no worse for wear for having undergone the treatment. Baby S subsequently received umbilical-cord blood stem cells at Dr. Fernando Ramirez’s clinic in Mexico near the U.S.-Mexican border.
During the first few weeks following the treatment, Baby S was exceptionally tired. Fortunately, his neurodevelopmentalist had been briefed on everything and actually had experience with patients who had received stem-cell therapy. The therapist reassured the Ss that all was on track.
Within a month or so following Baby S’s treatment, the Ss started to see improvements. According to Mrs. S., “Each day was a little like Christmas because we could see a new improvement, however small, we didn’t see before. We saw our baby’s progress begin to speed up. In the year following hUCSC treatment, we saw more progress in Baby’s rehabilitation than in all the previous years of intensive therapy combined.” Among the things the Ss noted: (Note that everything listed below is progress that followed the stem-cell therapy and that this
progress has been cumulative. Once a step emerged, it held fast and was “built on” by successive developments.)
August 2003
• Smoothly flexing and extending fingers in succession on occasion.
• Head stability improved.
• Small improvements each week in terms of muscle strength, as well as his ability to employ muscles to do various things (as noted by therapists).
• Able to rotate his wrists.
October 2003
• An increase in joint articulation and muscle tone (without reliance on Botox injections used previously).
• Shows levels of voluntary muscle control in his legs.
January 2004
• Head shape changes (as noted by therapists).
• Invents some simple one-step games.
• Decrease in spasticity.
February 2004
• Can turn his head toward the sources of noise or voices.
• Is engaging in activities that previously would have elicited intense crying.
• Toes and feet are more animated.
• Has started laughing and kicking to propel himself toward toys.
April 2004
• Although still not able to sit up on own, when supine, Baby S can raise his head and upper shoulders a few inches off the floor.
• Shows more upper lip involvement.
• Is much more capable of connecting specific vocalizations to his needs and their satisfaction.
June 2004
• Raises arms occasionally in attempts to reach and grab.
• Brings himself to a sitting position, using arm support, while his legs are straddling an object.
• Brings his hands to midline twice.
July 2004
• Vocalizes something that resembles singing.
• Enjoys greater head control.
August 2004
• Completes a front-back-front roll for the first time.
Oct. 2004 (After second umbilical-cord stem-cell treatment)
• First eats a banana that wasn’t mashed up. While holding his hand around the banana (with a little assistance), Baby S brings his head to the banana, takes a bite, chews, and swallows it!
• Rolls from back to tummy and attempts to scoot.
• Enjoys surprises, new sounds, and new people.
• Is a very friendly, curious, and happy, little, wiggly person.
Because the Ss endured years of marginally beneficial therapy, finally seeing major improvements only after Baby S’s treatment with stem cells, the S family has come to believe that “the umbilical-cord stem cells are responsible” for the progress. Mrs. S. adds: “We cannot imagine where we would be without the extraordinary efforts of Dr. David Steenblock, Dr. Anthony G. Payne, and their colleagues at Steenblock Research Institute. We can imagine where hUCSC therapy might take our baby. God willing, even though he still has far to go in terms of recovery, the umbilical-cord blood stem cells might ring the alarm clock bell that not only wakes up our baby, but gets him out of bed! All we need is funding for more hUCSC therapy, time, and faith!”
The Alan Robertson Story – Cerebral Palsy
When Paul and Linda Robertson first heard the news that they were to be the parents of twins, they were elated. The passage of time quickly disabused Linda of any notion that pregnancy would be fun or exciting: During the pregnancy, she gained sixty pounds and developed gestational diabetes. Then, thirty weeks into it, her water broke and she found herself in an emergency room surrounded by doctors and nurses who were struggling to preserve the health of her babies.
The first baby to make his debut was Alan, followed by Michael. Though small, the boys appeared normal. A little later, the Robertsons were informed that their babies had RDS (respiratory distress syndrome) and had to be on ventilators. Linda, who is a nurse, was well acquainted with what these breathing-aid machines look like and how they work. But nothing prepared her for the sight of her two boys all hooked up by tubes to these mechanical gizmos. Her reaction was immediate: She wept. Michael rallied quickly; he was discharged and went home after four weeks. But Alan, who had developed an infection, had to remain in the hospital on antibiotics and did not go home for two more weeks.
With help from relatives and time off from their jobs, the Robertsons were able to devote several months to intense one-on-one care of their boys. Soon, although Michael was crawling about the floor on all fours, Alan was having trouble just rolling over. As the months went by, Linda could not help but notice that Alan was not catching up with his brother. In fact, his motor skills, including his ability to get around—were not developing much at all.
The Robertsons promptly took Alan to a pediatric neurologist who did a brain scan. The doctor’s findings: Alan had white matter damage to the ventricles in his brain (periventricular leukomalacia), accompanied by bleeding. Diagnosis: Alan had cerebral palsy. Like other families with special-needs children, the Robertsons’ life soon became filled with a litany of therapies and doctors. This was not easy on Linda, especially; she found the whole situation unreal and the source of tremendous grief. Her emotions ran a “roller coaster” course that sorely tested the fabric of her marriage. Paul Robertson, however, held fast and was (as Linda put it), “the anchor that kept our marriage afloat.”
Like so many parents in their situation, the Robertsons began researching credible treatments and therapies that might help their son function better. One thing that popped up again and again was hyper- baric oxygen therapy (HBOT). The Robertsons bought a portable home chamber with $12,000 out of their own pocket, and witnessed their son’s gradual improvements with regular HBOT at home. They also took Alan to booster camp, a place designed to help children with physical challenges improve their mobility and develop other skills.
Aware of the increasing press and media attention being focused on stem cells, the Robertsons began to more closely examine whether this treatment approach was safe and whether it might benefit their son. While investigating a new HBOT facility in Sacramento, California, early in 2003, Linda learned about some pioneering umbilical-cord stem-cell work going on in Mexico. This led her to www.stemcellther- apies.org and from there to Steenblock Research Institute, where the staff put her in touch with Fernando Ramirez, M.D., and his hUCSC therapy program. After “doing their homework,” the Robertsons took Alan to Mexico for treatment in June 2003. In the months that followed, the Robertsons saw rapid improvements in Alan’s ability to get about and to manipulate objects. A second stem-cell treatment was done in November 2004. Additional gains in function ensued.
Says an ebullient Linda, “To our great joy Alan has made significant improvements since the two (human umbilical-cord stem-cell) treatments. His muscle spasticity has decreased tremendously, which has benefited his hand dexterity. Before the treatments his hands were usually tightly fisted—now they are open. His right arm was much tighter, but now he can open doorknobs and the refrigerator with his right hand. He can also open candy wrappers, peel off stickers from walls, and do many other things he could not do prior to the umbilical- cord stem-cell treatment. He can now also transition from lying to sit- ting on his own (something he couldn’t do before), his speech has improved, and he usually can communicate in longer sentences than was true before the treatments. And after his second treatment, he was able to walk on a reverse walker by himself!”
The Robertsons’ enthusiasm and confidence are palpable; they plan to return to Dr. Ramirez’s clinic in the near future for their son’s third human umbilical-cord stem-cell treatment.
The Sammy Mograbi Story – Cerebral Palsy
Thirteen years ago, Samuel Mograbi suffered a traumatic brain injury at birth from an obstetrical accident known as “abruptio placentae.” He was deprived of oxygen for an estimated three to five minutes and was born vaginally (because there was no time to perform a cesarean section), with Apgar scores of 0, 1, and 4. The prognosis was cerebral palsy accompanied by a seizure disorder, and later on, learning disabilities. Throughout Sammy’s childhood, the Mograbi family sought and pro- vided Sammy with both traditional and unconventional therapies, treatments, and with education (conductive education)—all with extraordinary results considering the severity of his injury.
Sammy currently attends a private school, accompanied by an educational health aide provided by the school district, and he is main- streamed in most classes. Sam’s aide helps adapt the class work and tests and works with the teachers so that Sam can participate to the best of his abilities. Sammy uses a manual wheelchair in school with some difficulty, and he uses his walker with his aide’s assistance. He is verbal with some impairment. Socially, he is age appropriate.
When Sammy was twelve, the Mograbis decided to participate in a pilot stem-cell study in Mexico that was being conducted by Dr. Morales with technical support from Steenblock Research Institute. (Previously, they had had a very positive experience with Dr. Steenblock, when Sammy received hyperbaric oxygen therapy at Dr. Steen- block’s Brain Therapeutic Medical Clinic.)
Throughout the one-year period following Sammy’s first injection, he experienced some remarkable developmental growth that was documented by standardized evaluations conducted by the Mograbi’s occupational and physical therapists.
In Sammy’s case, progress has usually been steady, yet slow, because of his CP. Normal development simply cannot and does not occur as it typically does in developing children, but results instead from intensive rehabilitation. Additionally, the progress that Sammy makes is constantly challenged by his physical growth, so that lasting changes are all the more difficult to support and maintain. Therefore, the Mograbis have been proactive in their approach and they support Sammy with a wide range of therapies, treatments, and activities designed to stimulate his rehabilitation. The Mograbis don’t feel the need to measure the benefit of each individual therapy as they believe that the variety of therapies presented affords greater opportunities for Sammy’s body to integrate what it needs at that particular time.
The first week after the injection, Sammy’s mother made sure that Sammy’s activities were minimal. Although strict adherence to the required diet was difficult, the Mograbis had explained the cell therapy to Sammy, and he understood the importance of maintaining the diet for at least the first week. Each week, they added a favorite healthy food, staying away from all sweets, beef, and juice for the first month.
After the second week, Sam commented that he felt a little “funny,” without being able to articulate what it was: he was aware of something happening in his body. As Sam slipped back into his daily routine, the Mograbis noted subtle, new movements: the way he rotated his left wrist, his right hand now open at rest, the improved dexterity of his left hand, successful attempts to pull off his shirt, and more.
Often, Sammy’s therapist had an exciting session to relate. “Shadow” movements were appearing, which meant that new abilities were forthcoming. The cells seemed to be effecting changes at a very low developmental level, at the foundation. Some of Sam’s awkward gestures began to smooth out and appear more fluid, as if his awkward- ness was compensatory and he revisited earlier stages of development; so that he now had movement options that he did not have previously. The more he chose the correct movement pattern (initially with a therapist’s guidance), the more frequent and natural the new movement was. Eventually, he retained the new movements that appeared, and they became the norm. He could now bring his right knee up by himself and maintain a flat right foot when taking a basketball shot, and get himself into the “downward dog” yoga position and do a reciprocal crawl instead of his usual shuffling.
Over time, the Mograbis began to see improvements in Sammy’s balance, his fine motor control, and his speech. It seemed as if Sam could better receive and integrate all of his therapies, and there were many; at school, the traditional ones—occupational therapy, physical therapy, and speech—and after school, movement therapy, fitness training, conductive education yoga, swimming, cranial sacral therapy, and massage. During summers, Sam attended the International Clinic of Rehabilitation for a two-week program in the Ukraine, and the Eureca Institute in Anaheim, California, for a four-week Elastic Suit Therapy Program (Grace Wu, owner and director). Sam has worked hard, gotten stronger—and his functional movements have improved accordingly.
As Sammy continued to progress, the Mograbis noticed a change in his attitude; he was more determined than ever to reach his personal goal of independent walking with his walker. In October, one year after his injection, Sammy walked a quarter mile home from his cousins’ house. It took him a little over an hour and gave him blisters on his hands, but the look of pride and accomplishment on his face was price- less. The whole family, along with some neighbors and friends, congratulated him! This was a big event in the Mograbi household.
Two months later, the Mograbis returned to the West Coast for a second stem-cell injection. This time the injection was uncomfortable for Sammy and the Mograbis gave him a pain reliever and anti-inflammatory to reduce the pain and swelling at the injection site. After a few days of rest, he felt better and was agreeable about maintaining his diet. Again Sammy told the Mograbis that he was feeling a little different.
Since then, Sam’s posture is noticeably straighter, more erect. He says that it is getting easier to do some things because his body is listening and responding better. The Mograbis look forward to seeing what each new day will bring and thank God for the opportunity Sammy has been given by Dr. Ramirez and the other doctors and scientists involved. The Mograbi family is optimistic about the future. They hope and pray that stem-cell therapy will be the catalyst for healing and improved functional movement for Sammy, and all those with brain injuries, especially the children.
The Tyler and Trent Frye Story – Cerebral Palsy
Christy Frye is the mother of nine-year-old twin boys, Tyler and Trent, who have cerebral palsy. The discovery of umbilical-cord stem-cell treatments and the process of obtaining them for the twins has involved the commitment of the entire Frye family—Ron, Christy, and their oldest son Evan, as well as the twins themselves.
The Frye’s eldest son, twelve-year-old Evan, is a terrific big brother. At the age of five, he consoled Christy one day by saying: “Don’t worry, Mom, if they never walk; I’ll just give them piggyback rides!” To this day, whenever feasible, he includes his brothers in his activities. Tyler and Trent, the nine-year-old twin boys who make this story unique, have a super attitude despite having been diagnosed as having spastic quadriplegia cerebral palsy. (A condition that has robbed them of independent functioning.) Trapped inside bodies that will not take them outside when Evan runs by and says, “I’m going to play basketball,” they tell Christy that in their dreams, they can run, walk, and play basketball. They will try anything once and never give up despite their disabilities. Christy’s ultimate goal is to see the boys walking and functioning independently. If this is never happens, “Evan’s back will probably be very sore and tired.”
The Frye’s journey began in July 2003, when they attended the Third International Symposium for Cerebral Palsy and the Brain- Injured Child. (The boys had previously received eighty hyperbaric treatments, which had lessened spasticity and relieved constipation, thanks to Dr. Paul Harch who would be at this symposium.) At the symposium, the Fryes met Dr. Anthony Payne and learned how umbilical- cord stem-cell therapy being done in Mexico was apparently benefiting children with cerebral palsy and brain injuries. Videos of children before and after treatments revealed significant improvements in motor and cognitive functions. Also at the symposium, the Fryes met Grace Wu, the owner and director of the Eureca Institute, who introduced them to Adeli suit therapy. More aggressive than conventional physical therapy, this therapy involves four to five hours of intensive therapy, using the patented Adeli suit, only available for use by licensed therapists trained in Poland. That spring, the Eureca Institute in Cali- fornia had an opening for the boys, and the Fryes decided to accept it.
During the boys’ long therapy sessions at the Eureca Institute, the Fryes remembered the umbilical-cord stem-cell treatments they had learned about at the symposium and, since Dr. Steenblock had an office not far from the Eureca Institute, they arranged to see him. The boys had the heavy-metal testing and allergy tests that Dr. Steenblock suggested; ten well-tolerated hyperbaric treatments were also per- formed. The Adeli suit therapy proved to be very successful, and the boys were walking on a treadmill for the first time, assisted by the bungee cords.
As the boys’ therapy session at the Eureca Institute was ending, with stem-cell treatment very much on her mind, Christy phoned a man (who wishes to remain anonymous) whose wife had tried umbilical-cord stem-cell injections when suffering from advanced multiple sclerosis. During a subsequent conversation, Christy answered his questions about the length of the Frye’s marriage, their commitment to the stem-cell therapy and its follow-up, and their religious beliefs. Based on her answers, Christy was elated to learn that he and his wife had decided to donate two injections to the boys! It was the miracle the Fryes had been praying for. During the next few days, the Fryes discovered that they would be the first of several families to travel to ITL Cancer Clinic in Freeport, Bahamas, for their sons’ injections. When they arrived there, Dr. John Clement introduced himself and handed Christy two vials of frozen umbilical-cord stem cells. The moments leading up to the actual injections were difficult for Christy because she was still experiencing the self-doubt that accompanies entering uncharted territory. She had, however, spent more than a year researching different stem-cell treatments and had spoken to other parents who had had umbilical-cord stem cells provided for their children more than once. She wanted what they had—success and improvements. After the injections, the boys experienced slight facial flushing, with Tyler showing some slight redness and swelling at the site of the injection that disappeared within ten minutes. More than physical therapy or Botox, the effects of this type of treatment were immediate and permanent. Tyler’s and Trent’s spasticity lessened first—they didn’t need antispasticity medication or Botox injections anymore. Then about four to six weeks after their injections, to their amazement, Tyler began speaking more clearly— and then, in complete sentences! He still wasn’t as quick as his twin, Trent, but there aren’t too many kids who can out talk Trent! Trent’s improvements were not as pronounced as Tyler’s, since he could al- ready talk and feed himself.
It has been a little more than a year since Trent’s and Tyler’s first injection, and the Fryes are hopeful that the results of a second injection might include walking independently. They have just one stumbling block: the need to raise the funds to cover the cost of the stem-cell therapy. Christy hopes that as knowledge and understanding about umbilical stem-cell therapy grows, more resources will become available to treat children with cerebral palsy.
May 3, 2011 RE: Andrew Livingston
Dear Doctor,
The patient, Andrew Livingston, presented to our office 7/31/07 for relief of musculoskeletal complaints. He has been seen intermittently since that time. When the patient initially presented to our office for care, he was unable to lie prone on the table, had difficulty in ambulation, and had limited use of the left upper extremity due to cerebral palsy. The hip was in severe contracture, there was severe spasticity of the left adductors, hip flexors, left paraspinal muscles, and left upper trapezius muscle and cervical musculature, and left pectoralis muscles.
The patient has been under care since the initiation of stem cell therapy and I have been quite amazed at his progress. He is now able to lie completely prone on the table for treatment and ambulation has improved, as well as his ability to maneuver. The spasticity of the musculature has greatly decreased in general. He shows only slight hip flexor contracture and spasticity of the paraspinal and cervical musculature is almost nonexistent. He has also gained more use of the upper extremity. The primary muscles that exhibit spasticity at this point are the left hip adductors and left pectoralis muscles.
We are treating the patient chiropractically and have him stretching rigorously at home. He is also using home muscle stimulation to build muscle strength and mass. In the office, our current focus is to stretch the adductors of the left leg, stretch the left pectoralis muscles, and improve the biomechanics of the feet (which I am hoping will aid in the internal rotation of the left tibia). I have given the patient soft orthotics to help correct the excessive pronation of the right foot and help decrease the leg length discrepancy. He is also wearing shoes that help stabilize the ankles more adequately.
I have been very excited and hopeful of Andrew’s progress and look forward to seeing his continued progression. If you have any other recommendations for this this patient that we may be able to employ, please feel free to contact me by any means necessary.
- Tiffany Taylor DC, APC