Saving Isaiah

#SavingIsaiah   

Isaiah is a seventeen year old young man just finishing his sophomore year at Fossil Ridge High School in Fort Collins, Colorado.  He lives a seemingly normal life. But summer break will not look the same for him. Instead of hang outs with friends and pool parties, Isaiah will be returning to an alternate reality of medical exile on the streets of some of America’s toughest cities fighting for his life.

Isaiah has suffered since he was a toddler from a mysterious illness. After 15 years of struggle to find answers and constant crisis of Isaiah not having access to treatment. His parents were told he would probably not live past his early twenties and would continue to experience severe neurological decline until he died. The local hospitals were not even equipped with the level of MRI equipment necessary to even monitor his condition. Isaiah’s prognosis was detrimental and life threatening.

Unwilling to accept this outcome and driven by a mother’s instinct, Liz Bunya, having already quit her job to focus solely on Isaiah’s needs, researched and pushed for evaluation by more experienced epileptologists. Thus began the official #SavingIsaiah movement. “I have been independently researching the emerging science of neuropathology since Isaiah was small and the doctors were telling me that his seizures were just bad behavior and night terrors. I could see that this was something happening to him and not psychologically based.” said Liz, “I knew enough to know they were going to tell me he had epilepsy; I just could have never imagined that I was doing all this fighting to be delivered a death sentence for my child.”

Months of fierce struggle and incessant phone calls to university hospitals all over the country, yielded little response. Isaiah’s parents also fought to get supplemental insurance on top of regular insurance because the bills were already spiraling up into the hundreds of thousands of dollars and the journey was just beginning.  This hard-working family only makes enough money to pay taxes, not qualify for the benefit of those tax dollars. It has been a long, hard struggle accessing the medical help needed to Save Isaiah. 

Answers for his condition completely escaped the medical community until just after Christmas of 2013. Following 15 years of heart wrenching struggle in faltering medical and special needs systems, the family got a much needed break allowing Isaiah to finally get to the help he needed. Liz received a call from the number one doctor on her “Dream Doctors” list, Dr. Orrin Devinsky , professor and director of the Comprehensive Epilepsy Center at NYU-Langone Medical Center in New York City.  Dr. Doyle clinically specializes in rare and intractable epilepsy while standing at the forefront in scientific research.  This amazing doctor called to invite Isaiah to be his personal patient. “It was an opportunity that changed everything. We are really blessed to have great doctors and medical teams who at are at the top of the field. It was the worst kind of nightmare to live in as a parent. But, finally after a decade and a half of struggle, making it to someone who could speak intelligently about what was happening to my child and how significant it is that he isn’t more damaged than he is, is empowering.”

Without knowing what to expect, Isaiah and his mom packed suit cases and left 3 younger siblings, dad, friends and normal life for what ultimately turned into a year of bouncing around the busiest, most expensive and overwhelming city in the world, New York City.

Just after Christmas 2013, Isaiah was admitted to the Swedish Medical Center, one of the nation’s leading neurological institutes.  There, with his head wired to the wall for weeks of grueling sleep deprivation & observation via long-term video-EEG monitoring, the doctors were finally able to give his long suffering family his diagnosis.  Isaiah has an ultra-rare, medically evasive and violent form of lethal epilepsy. Because of the severity and increasing volatility of Isaiah’s seizures he was determined to be at exceptionally high risk of Sudden Unexplained Death Syndrome. Doctors had never encountered an enigma such as Isaiah’s condition or the bizarre manifestation of this epilepsy. They offered little to no hope for his life.

 Liz and Isaiah learned to survive the streets in order to stay close to his doctors and hospital. They learned NYC Street smarts, subway systems and a whole new way of existing; while contemplating the fact that he could die any day. Surviving the historically tough neighborhood of Harlem during the day was hard enough for an autistic kid and his mildly autistic mother, but Isaiah was also continuing to have seizures threaten to choke his life away nightly while he slept. “It was the most challenging and lonely thing I could have ever constructed in my strangest dreams,” said Liz.

Part of Isaiah’s miracle is, despite the violent seizures decimating Isaiah’s cognitive function and melting his hippocampus, he is not physically disabled. Isaiah is still able to recognize, though he has lost most of his memory and abilities like reading and even thinking. He is still one of The Lucky Ones.

 Most days when Isaiah was well enough, he and his mom passed time on the NYC streets and in subway tunnels  observing and participating in street performance. Isaiah called himself “DJ Beatz” and loved juggling and dancing to make people happy, even though he knew he was not a good dancer. When people laughed at him, he just said “at least they’re smiling.” Harlem was tough, but a great place for an enthusiastic crowd. Isaiah and Liz made a life in their flipped reality and found friends at one of the country’s oldest black music societies just a few blocks from the legendary Apollo Theatre. Isaiah dreamed of being good enough to play in Grand Central Station where celebrities are even known to do cameos.  

Financially, Liz and Isaiah had just enough money for one-way tickets and food to last only days at a time. “Just a few floors up from living on the street” & armed with basic faith, Liz turned to GoFundMe.com and started blogging the details of their struggles for her own Facebook contacts and secondary friends. The campaign, though small, was able to provide the two with a modest living situation, Metro (subway) fare and enough ‘dollar slices’ to keep themselves fed, get them to midtown for treatment and street busking (performing) for Isaiah. “It was a coming of age while staying prepared to die for him. Being on the streets all the time was dangerous and we got robbed enough times to learn how to manage the situation without it escalating or actually losing more than a couple dollars,” said his mom.

 Isaiah’s original treatment plan stretched into June of 2015 but a unanimous decision was made after some key discoveries.  The main discovery was that the electrical anomaly preying on Isaiah daily and his rate of decline mandated surgery to remove Isaiah’s delicate grey matter. A partial brain resection became his only viable option despite the risks.  Without surgery, Isaiah just wouldn’t be around to try alternate therapies like cannabis which is medically available to Isaiah and is one of NYU’s research focuses.

The medical team hoped to gain at least moderate control of the seizure activity with this procedure. The reality for so many kids with severe cases of epilepsy is grim and many not only face this form of electrical torture, they are left in a variety of debilitated states. Surgery can add to the list of deficits and even leave kids without vital functions. “It becomes a choice between only bad options and all you know is your kid is probably going to die in your arms or suffer grave damages.”

“Signing consent to have my child’s skull cut open and brain severed was absolutely the most wretched thing I have ever had to do,” said Liz, “When they took him back and the doors closed I just stood there, numb and staring at nothing. My body was a fragile cast of me and when I walked out to the street it felt like the marrow was seeping out of my bones like burning lava. I don’t even remember consciously operating my body.” The wait for Liz was eight grueling hours.  She wandered Manhattan alone, while the surgeons used power tools to cut her first born child’s head open and possibly take the very essence of his being. “It is that time when you can never feel big enough to take on the reality of your situation.”

BUT……the surgery was a greater success than anyone could have hoped! Isaiah is so good, he made it. He made it   through the surgery and did not complain once. He is a major life-saving surgery champion.

“He was polite to his nurses and quickly won the floor over! He is really adorable in person even if the innocence IS a result of the brain damage,” said his mom, “It is hard to watch the son you know disappear and be replaced with a toddler version of himself. You wonder if he will still get a chance… but, it doesn’t matter, he is still absolutely beautiful and amazing.” “When we went back to the neurologists for his post-surgical follow up one of the doctors cried they were so impressed with his recovery.”

While Isaiah lay in recovery his mom worked frantically to shut down their New York life and with the holiday generosity of the good people on social media she and Isaiah were miraculously home for a dramatic surprise Christmas homecoming. The Bunya family had all 6 members in one place for the first time in almost a year. *VIDEO*

The Bunyas have been reveling in the moments since trying to make up for lost time. It is a time prescribed by Isaiah’s physicians not just because major brain surgery is a huge thing to recover from but also by the end of their New York adventures, Liz was wrecked with a stripped immune system at 100lbs and struggling with the effects of Post-Traumatic Stress Disorder. “PTSD is something I have had to learn to live around and let happen. It’s what comes with years of holding the body of a violently convulsing child night after night and just praying every breath back into his body. And getting up to face a society that could care less and no hope to be found. The idea that all of that might be a thing of the past is the most precious idea to me,” she said.  Liz has taken a step back from the internet and pouring details out to her Facebook “Friends” and has been focusing on getting better, being a mom and figuring out the second part of Isaiah’s treatment plan.

Today, Isaiah has just finished his last class for the year, had drama for the last time with his best friend Ashley, a special needs girl with Cerebral Palsy.  This is the same friend that Isaiah had the privilege of taking to prom. *Video*.

While life may seem normal, Isaiah is still in danger. He is having cyclical episodes that require medical observation. Isaiah is clinically at high risk of his brain’s “Muscle Memory” redeveloping the seizures even without the source of the seizures, as his Neurosurgeon Dr. Doyle describes it. The problem is that nothing has changed regarding the access to MRI Scanners that are high resolution enough to monitor Isaiah. He is still having periods of uncontrolled neurological malfunction but when taken to his local emergency rooms or hospitals, he receives a vitals check and apologetic dismissal because according to admittance policy, a child must be in active ‘Status Elipticus’ to get admitted for observation. If Isaiah were to ever get to that active status he would be dead.

Isaiah and his mom are getting ready to go back out and finish what they started. Isaiah needs to get a chance to recover. After literally losing his entire childhood to this illness, enduring a condition that has the same simultaneously occurring effects as electrical and waterboarding torture straight to his head. Isaiah is a teenager who desperately just wants to be a kid. He is so focused on getting well and having a chance at a better life.  This is his dream come true, to get the chance to be a normal kid.


 
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Liz Bunya 
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Fort Collins, CO
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