Ysadore’s Story

Ysadore is a survivor of acute necrotizing encephalopathy of childhood (ANEC) . ANEC is an extremely rare and, in some cases, fatal condition of unknown etiology.

He suffered a profound and severe injury to his brain when he was ten months old. born a healthy baby He contracted a virus, HHV6, and within minutes, literally minutes, went from a baby ahead of the developmental age appropriate growth chart to a ten month old in a vegetative state with 24 hours to live. He was diagnosed with ANEC. The consequence of ANEC has left him with severe neurological damage bilaterally to his thalami, brain stem, cerebellum and destroyed a majority of his brain’s white matter. At the time of his injury there were approximately 300 reported cases of worldwide. Medical professionals directly involved in his case at that time, reported ANEC often claimed the lives of its victims, if it had progressed to the severity similar to that of his neurological MRI findings, most died within 72 hours. Dr. Mizuguchi, the doctor who first identified ANE reviewed his MRIs, gave a prognosis of the likelihood of death. additionally, in-house pediatric neurologists gave him 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 he would live past the age of two, according to medical professionals directly involved in his case at the time.

Given the data, case history, knowledge, resources, and experience of the medical profession in ANEC at the time, there was no conclusive medical explanation given for why he defied prognoses and survived. 7 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 his 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. He then underwent surgery to have a g-tube inserted because he could no longer eat or drink by mouth. At the same time the g-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, react to painful or soothing touch.

Over and above the profound and initially thought to be fatal neurological injury, He underwent open heart surgery within days of him initially being admitted into pediatric ICU to repair the right atrium of his heart. During the days immediately post neurological injury, his heart rate gradually began to drop to dangerous levels. Doctors explained that, as with all other ANEC cases, his 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 his heart.

His neurological function and development profile at four months post initial hospitalization discharge was as follows:

 visual competence: he had no light reflex, which he had 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 pandiculationno 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

Once he 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. He was 21 months old at this point. It was as though he had reverted to being in vitro again neurologically.

After 8 years of unwavering determination and relentless hard work, he has defied all prognosis and continues to move beyond expectation. He’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 his life. He 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. He 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 him 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 his exceptional and rare condition.

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 him. Now 10 years old, he has survived more than most will face in a lifetime. He fights for his life with an unstoppable passion, and despite his profound and severe neurological injury. He has age appropriately completed 5th grade at school where he was doing 6th grade math and reading above 8th grade level. He’s intellectual ability is astounding. Prior to beginning 1st grade and following the academic curriculum of mainstream education, he followed, and continues to follow, an intensive intellectual and cognitive developmental program. The result of years of cognitive stimulation and development together with neurological developmental and stimulation programs, was that he began 1st grade mainstream academic education at the appropriate age and is currently about to begin 6th grade.

He 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. He’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 his bloodwork. According to his pediatrician, he would not know that he has such a profound neurological injury from looking at his bloodwork: His blood work results are the best that his pediatrician has ever seen, even when compared to that of a healthy child.

He is no longer cortically blind and is in the third and final stage of cortical vision impairment, cvi, rehabilitation. He communicates verbally and he started learning how to use a high tech eye gaze system for communication and reads above 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. He 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 g-tube but now takes everything by mouth. He 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. all his nutrition is provided only in the form of food and follows a complex and highly specialized program.

His desire and determination to transcend his accomplishments is remarkable and inspiring. He continuously exceeds expectation, defies medical prognosis and pushes the marker on the spectrum for optimum potential.