The Institute for Integral Neuro-Fasciology was created through determination in the face of formidable medical challenges. Our chief task; to keep a survivor of Acute Necrotizing Encephalopathy of Childhood(ANEC), alive. ANEC is an extremely rare and, in some cases, fatal condition of unknown etiology.
Ysadore suffered a profound and severe injury to his brain when he was ten months old. The process of ANEC has left Ysadore with severe neurological damage bilaterally to his thalami, brainstem, cerebellum, and destroyed a majority of his brain's white matter.
At the time of Ysadore's injury there were approximately 300 reported cases of Acute Necrotizing Encephalopathy, ANEC, worldwide. Medical professionals directly involved in Ysadore's case at that time reported ANEC had claimed the lives of it's victims. If it had progressed to the severity similar to that of ysadore's neurological MRI findings, most within 72 hours [fn1].
Dr. mizuguchi, the doctor who first identified ANEC, who reviewed Ysadore's MRI’s, gave a prognosis of the likelihood of death. Additionally, in-house pediatric neurologists gave Ysadore 24 hours to live: best case scenario, 72 hours.
Upon discharge from the hospital months later, and upon follow up visits, it was reported that it was unlikely that Ysadore would live past the age of two, according to medical professionals directly involved in Ysadore's case at the time.
Given the data, case history, knowledge, resources, and experience of the medical profession in ANE/ANEC at the time, there was no conclusive medical explanation given for why Ysadore defied prognoses and survived. To date, seven years later, Ysadore's survival when compared to his MRI findings still astound doctors, let alone the level at which he functions.
The destruction to Ysadore's deep brain matter and his brain's connecting network has had devastating consequences. It left him in a months-long vegetative state, and when he began to respond slightly to external stimuli, he was without a gag reflex, which doctors reported indicated brainstem involvement.
Ysadore then underwent surgery to have a gastrostomy feeding tube inserted because due to his profound neurological injury he could no longer eat or drink by mouth.
At the same time the gastrostomy feeding tube was inserted, doctor's performed a total Nissen Fundoplication, which was a procedure to wrap his stomach around the lower end of his esophagus to prevent him from aspirating food and fluid into his lungs. Additionally, doctor's reported that he was 100% cortically blind and without even a light reflex. Upon later evaluation it was revealed that he was neurologically paralyzed leaving him unable to move; he had no vital grasp reflex; his neurological injury left him completely insensate; he had neither vital nor gnostic sensation; He could not feel or react to painful or soothing touch [fn2].
Over and above the profound and initially thought to be fatal neurological injury, Ysadore underwent open heart surgery within days of him initially being admitted into pediatric icu to repair the right atrium of Ysadore's heart. During the days immediately post neurological injury Ysadore's heart rate gradually began to drop to dangerous, almost unsurvivable levels.
Doctors explained that, as with all other ANEC cases, Ysadore's falling heart rate was due to the nature and severity of his neurological injury and that he was dying: doctors reported that his autonomic nervous system was failing. the reality was that a pic-line, inserted to administer life saving medication upon initial admission, had caused damage to the right atrium of Ysadore's heart.
Ysadore’s neurological function and development profile [fn2] at four months post initial hospitalization discharge was as follows:
visual competence: he had no light reflex, which one has at birth
auditory competence: he had a startle reflex, but it was dysfunctional and neurologically age inappropriate
tactile competence: he had a babinski reflex, but it was dysfunctional and neurologically age inappropriate; he had no vital sensation
mobility: completely neurologically paralyzed; no functional reflex mobility response; no pandiculation
no verbal reflex or vital response: no birth cry and no vital cry, as in response to a threat
manual competence: no grasp reflex, which one has a birth
When Ysadore began to emerge from his complete vegetative state, and for months thereafter, he had only two out of six components of normal neurological function and his development profile presented at the lowest level of brain function, that of spinal cord and early brainstem development, and they were dysfunctional. Those two reflexes usually integrate and disappear by the age of one month after birth on average [fn2]. Ysadore was 21 months old at this point. It was as though he had reverted to being in vitro again neurologically. This would take nothing less than the perceived impossible made possible.
Everyday and throughout the night, his mother, now co-founder of the institute for integral neuro-fasciology, researched her son’s rare condition of unknown etiology and worked with unwavering determination to find solutions to restore her son to what he had once been; at a minimum to provide Ysadore with every opportunity to achieve his optimum human potential.
Her objective was to give her son not only the ability to live but the ability to live a life worth living. After seven years of unwavering determination and relentless hard work, Ysadore has defied all prognoses and continues to move beyond expectations.
Ysadore’s neurological injury has left him obviously profoundly medically critical and with life threatening conditions of atypical forms of dysautonomia and grand mal seizures including the complications that accompany his severe physical disabilities. Grand mal seizures, sympathetic autonomic storms and parasympathetic autonomic dysfunction threaten Ysadore's life.
Ysadore is unable to regulate or control any physiological function that a well and normal functioning body does automatically. Blood pressure, body temperature, and heart rate must be controlled externally. Additionally, blood sugar and electrolyte balance must be maintained and supported with precise protocols. Ysadore rarely urinates or has a bowel movement without assistance that requires highly specialized techniques and interventions. This merely highlights the absolute bare minimum of what is required for Ysadore to live and what his daily life entails.
An intricate and highly complex framework of physiological, physical, structural, neurological, cognitive and nervous system support protocols have been designed to address ysadore's exceptional and rare condition [fn3].
However, despite the overwhelming difficulties and potentially life threatening consequences to execute the most simple and basic human functions required for survival, nothing is perceived to be impossible for Ysadore. Now seven years old, Ysadore has survived more than most will face in a lifetime. Ysadore fights for his life with an unstoppable passion, and despite his profound and severe neurological injury, Ysadore has age appropriately completed 2nd grade at school where he was doing 3rd grade math.
Ysadore’s intellectual ability is astounding. Prior to beginning 1st grade and following the academic curriculum of mainstream education, Ysadore followed, and continues to follow, an intensive intellectual and cognitive developmental program [fn2]. The result of years of cognitive stimulation and development together with neurological developmental and stimulation programs [fn2], was that ysadore began 1st grade mainstream academic education at the appropriate age and is currently about to begin 3rd grade.
Ysadore has a very sophisticated and developed sense of humor. His memory is flawless and his logic and reasoning ability far surpasses his age. The neurological and central nervous system program used with ysadore has provided the foundation for his exceptional cognitive and intellectual abilities. Ysadore's neurological development and physical progression are fueled and supported by physiological and nutritional protocols including cutting-edge connective tissue manual techniques. This has produced superior results in ysadore's blood testing. According to his pediatrician, he would not know that ysadore has such a profound neurological injury from looking at his blood work: Ysadore's blood work results are the best that his pediatrician has ever seen, even when compared to that of a normal, well child.
Ysadore is no longer cortically blind and is in the third and final stage of cortical vision impairment, cvi, rehabilitation. He communicates verbally and reads at grade level. he is no longer insensate and has both gnostic and vital sensation. He now has a vital grasp and a vital release and has further progressed to pincer grasp ability. Left and right manual ability is beginning to develop. Ysadore is able to propel himself forward with the use of both of his legs in a supine position. He is no longer fed via a gastrostomy feeding tube but now takes everything by mouth. Ysadore is no longer on any medication other than for sympathetic autonomic storms and grand mal seizures which are only given when needed; he takes no supplements other than a probiotic. All his nutrition is provided only in the form of food and follows a complex and highly specialized program.
Ysadore's desire and determination to transcend his accomplishments is remarkable and inspiring. He continuously exceeds expectations, defies medical prognosis and pushes the marker on the spectrum for optimum potential.
Ysadore is evidence that human potential is infinite and non-discriminatory.
The Institute for Integral Neuro-Fasciology developed from the determined belief that it was possible to find solutions and strategic frameworks to keep Ysadore alive and progress beyond expectation. As the co-founders of the institute reached the limits of the effectiveness of all therapies and medical interventions they had studied at institutes and with doctors internationally, they realized that Ysadore's exceptional and thought-to-be impossible needs to live and progress required extraordinary and cutting-edge methods.
From those roots and the determination that anything is possible, Ysadore directed the way to the creation of Integral Neuro-Fasciology, inf, and still today, together with it's co-founders, continues to push the limits of what is possible.
The pivotal moment in the creation of inf came with the realization: if a child with such profound neurological injury, and who initially was given a best case scenario of 72 hours to live, could develop and reach such astounding levels of physiological excellence and neurological development, then by logical reasoning, under the principles of inf, unwell individuals other than Ysadore could benefit. Then came the inspiriting question: to what extent would the benefits of inf bring to well, high-functioning individuals?
The co-founders were not only part of the phenomenal development and impact of inf on Ysadore but experienced first hand the astounding results of inf on well and high-functioning individuals: the ability to function at the cutting-edge of optimum human potential in extreme, relentless, and unforgiving environments. Herein lies the creation of inf: the vision to bring the possibility of integral well-being and optimum human potential to the unwell and well.
last updated July 2014
[fn1] medical professionals directly involved in ysadore's case at the time reported that prognosis pertaining to ysadore's case was based upon both age and severity of neurological injury. specifically, their prognosis was based upon reported cases at the time namely that children under the age of 12 months were at a higher risk of mortality and that severity of the brain injury was also a factor. the medical professionals directly involved in ysadore's case at the time reported that ysadore fell into both categories that were considered to have a prognosis of the likelihood of death, or at a minimum best case scenario he would live and not progress any further than his condition in the hospital at the time.
[fn2] this comprehensive evaluation was done at the institutes for the achievement of human potential.
[fn3] the physiological, neurological, physical, cognitive and structural protocols and frameworks designed by the co-founders of inf specifically for ysadore also draw upon the studies and practice of the institutes for the achievement of human potential, iahp; advanced biomechanical rehabilitation, abr; anat baniel method, abm; craniosacral therapy; and structural integration.