Saving Isaiah

Hi, My Name is Liz Bunya, I am the mom of a 17 year old boy Diagnosed only a year ago with an ultra rare epileptic condition with high morbidity and exceptionally high risk of SUDEP (Sudden Un-explained Death in Epilepsy).

This story is a boy named Isaiah. This is his story.

Isaiah just finished his sophomore year in High School, and lives a seemingly very normal Colorado life in the Northern Foothills city of Fort Collins. But the summer 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 for survival.

#SavingIsaiah

Isaiah has already tested his NYC Streets survival skills while beating a terminal condition and brain surgery that removed roughly 20% of his brain.

Isaiah has suffered since he was a toddler from a mysterious illness. 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.

The wrapping paper still strewn about, 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 the diagnosis of 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. Because of the bizarre manifestation of this Epilepsy, doctors had never encountered the enigma of Isaiah’s condition and offered little to no hope for his life.

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 are not even equipped with the level of MRI equipment necessary to even monitor his condition. Isaiah’s prognosis was detrimentally life threatening.

Unwilling to accept this outcome & driven by a mothers instinct, his mom, having already had to quit her work to focus solely on Isaiah’s needs, researched and pushed for evaluation by more experienced Epileptologists. Which 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, Isaiah’s mom, “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. Fighting to get supplemental insurance on top of insurance because the bills were already spiraling up into the hundreds of thousands of dollars and it was just getting started. Despite the financial stress, the 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.

Finally, Liz received a call from the Number 1 Doctor on her “Dream Doctors” List, the Professor & Director of the Comprehensive Epilepsy Center at NYU-Langone Medical Center in New York City. Clinically specializing in rare and intractable epilepsy while standing at the forefront in scientific research, calling to invite Isaiah to be his personal patient. “It was an opportunity that changed everything.”

Without knowing what to expect, Isaiah and his mom packed suit cases and left 3 younger children, father, friends and life for what ultimately turned into a year of bouncing around the busiest most expensive and overwhelming city in the world. Surviving the streets in order to stay close to his doctors and hospital, suddenly needing to learn NYC Street smarts, subway systems and a whole new way of existing; while contemplating the fact that he could die any day. Though, all of that alone was a miracle for an autistic kid and his mildly autistic mother, Isaiah was continuing to have seizures threatening to choke his life away nightly while he slept AND surviving the historically tough neighborhood of Harlem during the day. “It was the most challenging and lonely thing I could have ever constructed in my strangest dreams.” Said Liz.

Armed with basic faith that despite the fact that they only had enough money for one way tickets and cash to last a matter of days, Liz turned to GoFundMe and started blogging the details of their struggles and through 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 get them to midtown for treatment and street busking 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.

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, a new functioning age between 4-6 years old, he is still one of The Lucky Ones.

Most days when Isaiah was well enough, they passed time all over the NYC streets and subway tunnels observing and participating in street performance. Isaiah called himself “DJ Beatz” & loved to juggle and dance to make people happy. Even though he knew he was not a good dancer. When people laughed at him, he just said “at least their smiling.” Harlem was tough, but a great place for an enthusiastic crowd. Isaiah & Liz made a life in a 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 wanted to be good enough to play in Grand Central Station, where celebrities are even known to do cameos.

Though the treatment plan stretched into June of this year, the decision was made unanimously after some key discoveries; mainly being, the electrical anomaly preying on Isaiah daily and the rate of decline mandated surgery to remove Isaiah’s delicate grey matter. Isaiah just wouldn’t be around to try alternate therapies like cannabis which is medically available to Isaiah & is one of NYU’s research focuses. A partial brain resection became his only viable option despite the risks.

“Signing consent 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.” Said his mom of the eight- hour wait time. Wandering Manhattan, while the surgeons used power tools to cut her first born child’s head open and possibly taking 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.”



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 with-out 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.”

Isaiah is so good, he made it. He made it through the surgery and did not complain once, He was a major life saving surgery champion. 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.

“He was polite to his nurses and quickly won the floor over at every hospital we go to! 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”.

The surgery was a greater success than anyone could have hoped. “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 the holiday generosity of the good people on social media brought mom and son home for a dramatic surprise Christmas Home Coming Miracle and the Bunya Family were 6 members in one place for almost the first time since the previous Christmas. VIDEO

The Bunya’s have been reveling in the moments 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 for Isaiah 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 from 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 the second part of Isaiah’s treatment plan. 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. “We were 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 more damaged than he is, is empowering.

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, whom he took to Prom. Video.

Isaiah is still in danger, he is having cyclical episodes that require medical observation. 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 and He and his mom get a vitals check and apologetic dismissal from Emergency Rooms because a child must be in active Status Elipticus to get admitted for observation. By then, Isaiah would be dead.

Isaiah and his mom are getting ready to go back out and finish what they started. Isaiah needs to to recover. and have appropiate help healing. no one would cut a kids leg off and expect him to be okay fresh off the operating table...Being left a teen ager who desperately to just want to be a kid, after literally losing his entire child hood to this illness, enduring a condition that literally has same effects as torture.

This Web Site Is dedicated to Isaiah’s Struggle and Committed to helping him go to New York and San Francisco for his badly needed treatment. The Bunya’s don’t know how long they will be separated as a family this time and cognitive recovery at Isaiah’s level can take years. “He was reverted back to a small child intellectually, but this is the first time he and our family have had genuine hope for a future outside of falling between the cracks in the system until he died. That was the only possibility for him for so long.” Explained his mom

He wants to use his “New Life” to help others like himself. Now Isaiah is that much closer to doing just that.



*TED video of Isaiah’s Brain Surgeon, Dr. Doyle explaining Epilepsy. http://faces.med.nyu.edu/news/dr-werner-doyle-ted-talks

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