Our Story

The day was September 1,2008. A family still elated from a wedding that took place just two days before, still singing the songs from the night before -- an impromptu gathering after the wedding to welcome a bride home and invite a new son into the family, a gathering to give thanks, and enjoy the peace and serenity of each other. In the early hours of that day, four people, two fathers and their two daughters, embarked on a journey to drop off their children to college. After helping the girls get settled, the two began their return journey. Eager to get home. A birthday celebration for their niece awaited them. A family awaited them. In some ways, they are still waiting.

In the afternoon hours --the haze of happiness that engulfed an entire family dissipated -- with an accident. An accident, a series of unknowns, a family in desperate search for answers, for help... for hope. Two men, two men who are fathers, husbands, brothers, and sons, left. Only one came back. The other, our guardian angel in every aspect of the word, a man of faith, a man of honor, a pious man, a loving man, a man in whom everyone sought respite, was called to heaven. With that loss, darkness consumed this family. In that darkness was a glowing ember that was JC. In the days following the accident, JC was the light that the entire family gathered around, he was the flame that we kept fanning to become stronger and stronger, in him lay the happiness that we lost. He became our Superhero.

Here is our story:
John Kuttiyara (a.k.a. Johnson, John chachen, JC, our Superhero) suffered a spinal cord injury at C5-C6, which initially left him with no sensory or motor function from the neck down… he could not move his hands, waist or legs, he could not feel someone’s touch, he could not speak, he could not even breathe on his own. As so often the body belies the spirit, JC’s paralyzed body spoke nothing of his exuberant spirit bouncing around the room ready to sprint forward onto the difficult path to recovery that lay ahead. With this phenomenal drive, JC embarked on an incredible journey filled with love, laughter, tears, prayer, miracles, and inspiring individuals. And always beside him on this windy, sometimes bumpy, road was a dedicated team of friends and family… and our guardian angel, forever bestowing blessings and reminders of faith along our way.

I. THE FIRST DAY:

JC was brought to Westchester Medical Center (WMC) via medivac helicopter. He was in respiratory failure when he arrived and was quickly intubated. The trauma team found that he had vertebral fractures at C4 – C7, a burst fracture at C6, and intracranial bleeding. JC had emergency spinal stabilization surgery, and a gastrostomy tube to allow nutritional intake was also placed. After the surgery, the neurosurgeons informed us that they visualized an incomplete injury to the spinal cord. With some preservation of the spinal cord we could, thus, expect some level of recovery. JC remained at WMC in the trauma ICU and received excellent care from the doctors, ancillary staff, especially our nurse, Andrew. Andrew taught us to not only hope but work for better. We have been doing that ever since.

Despite what the neurosurgeons had told us, however, some of the doctors on the ICU team believed JC would remain completely dependent… he would never breathe on his own, eat on his own, sit up on his own, or ever walk again. This was their verdict.

Our family struggled with this conflicting news. Who do you believe – the surgeons who actually saw JC’s spinal cord injury or the doctors who were monitoring his daily progress? Did it matter how a certain percentage of patients with similar injuries did after a certain number of months? Didn’t it only matter how JC would do? But the doctors couldn’t predict how he would do. How could they? They only knew JC after September 1st.

Those of us blessed to know JC before September 1st, had a true understanding of the unique blend of grit, faith and Superman-like strength that made up the fabric of his being. We knew the JC who could out run all the kids in the family, the JC who showed us all how to dive with Olympic form, the JC who would be all over the volleyball court because no one could move as fast as him, the JC who would make breakfast for 50 in half the the time it took the team of girls, or the JC who would grill food for 50 people in a Summer hailstorm - when all the other boys refused, the JC who nonchalantly took off his suit and climbed a tree at Hastings-- chainsaw in hand, to trim the branches, the JC who would shovel his driveway and then go and shovel his neighbors, the JC who would spend hours in church cleaning, serving, helping, decorating, never to be noticed, never to be specially recognized, but just because, the JC who would be at your door before you could even finish the words "I need your help", the JC who could not sit still.
Never to be constrained by the shortsightedness of others, we all resolved to be guided by faith, urged by hope, and substantiated by his spirit, we pursued the road to recovery, hands entwined and eyes looking straight ahead. We would not relent.

II. WAITING TO EXHALE......

After 26 long days,JC was discharged to an acute rehabilitation facility in New York, Helen Hayes Rehabilitation.

JC who arrived to Helen Hayes on a ventilator was evaluated by a team of doctors, therapists, and nurses. JC’s initial assessment at Helen Hayes (HH) classified him as having an “ASIA A” spinal cord injury, which meant that based on his functional abilities at that time he had a “complete” spinal cord injury leaving him with no sensory or motor function below the level of injury. Of the five classifications, this was the worst and it supported those doctors who felt JC would likely remain completely dependent. Again, we chose hope and hardwork over reluctance, and strived towards recovery.

We plastered the walls of JC’s room with words of encouragement, pictures and signs made by JC’s many nieces and nephews, and messages of love and support. There wasn’t a square-inch of wall JC could look upon without knowing he was loved and supported. So with hope, love, and faith, JC powered through four rigorous months at HH.

Collectively, he spent 3 intense hours every day with the speech, occupational, and physical therapists. With each session someone from the family was there, learning, getting trained, helping JC achieve, while simultaenously being inspired by his will. The family that once gathered together every weekend for a celebration of some sort, a day of sports, prayer, museum trips, snowboarding trips, shore trips, sleepovers,-- any excuse to be together, now faithfully gathered in JC’s hospital room with equal fervor. In the evening hours the family would work with JC to repeat the exercises he had learned in his therapy sessions that day and in prior weeks. We also performed passive range of motion exercises and electrical stimulation to JC, in order to promote nerve activation and to prevent joint stiffness and muscle atrophy.

Effectively, JC had morning, afternoon and evening therapy sessions, which amounted to much more than just 3 hours a day. We don’t know anyone else with the mental and physical stamina to endure and excel in such a grueling rehabilitation regimen - JC achieved more than any one could have ever imagined. Guided by his determination and the faith given to us by our Guardian Angel, we remained firm in our resolve.

Our first of many miracles was when JC could be weaned off the mechanical ventilator and began breathing on his own. Slowly, he regained his ability to swallow and then to speak. Shortly thereafter he began to tolerate sitting upright and learned how to use a power wheelchair. With the help of adaptive equipment and feeding utensils fashioned by the occupational therapists, JC was even eating on his own. JC began working with the therapists on weight-bearing exercises and standing activities on a tilt table. After some time, he was able to tolerate standing for 15 minutes in a standing frame with TED (thrombo-embolic deterrent) stockings and an abdominal brace.

With each day, in small yet significant ways, JC began reclaiming his independence. With each advancement JC made towards achieving his independence, the family's commitment to one another became stronger. We rallied around his recovery -- and were healed by each advancement.

Four months at Helen Hayes, just as we were gaining momentum, we were told that, according to his functional assessments to date, JC had “plateaued” in his rehabilitation, and, thus, an acute rehab hospital was no longer appropriate for his recovery process. How could this be? We were working around the clock, tirelessly. Why couldn’t they see what we saw? Difference in perspective aside, our hands were tied, JC would soon be discharged and we were faced with the task of finding a facility that would best provide JC with the support and therapy he needed. After much research into skilled nursing facilities and many discussions with JC and the rest of family, we decided the best place for JC was back home with us.

The task that lay ahead of us was daunting. The Doctors discouraged us -- it would just be too difficult for us to manage. “What are you going to do,” asked one doctor, “have the whole family take turns taking day shifts and night shifts?”. Yes -- whatever lay ahead, we were prepared to face it together.

III. COMING HOME:

The initial challenges to make our home accessible to JC seemed insurmountable. First, the upper floor was completely inaccessible to him. He would be relegated to the lower level, which also needed significant modifications to allow JC easy access and mobility. Secondly, no longer assisted by the therapist, nurses, and aides that a hospital provides, we had to become his team of therapists, nurses, aides.

Approaching this next stage in JC’s road to recovery, family and friends rallied to help in any way they could. They altered the lower level of JC’s house as needed. Ramps were made, doors were widened, furniture was moved, and a bathroom was made fully accessible. Furthermore, plans were underway for construction of an extension that would house an elevator, which would allow access to the upper floor. More qualified members of the family trained in physical therapy, occupational therapy, speech therapy, and medicine applied their skills and knowledge to create a conglomerate of experts focused on JC’s recovery. Under their guidance family trained in business, finance, law or engineering became fluent in rehabilitation therapy. We attacked JC’s recovery from all sides, innovative in our approach, firm in our resolve, and driven by his endurance and perseverance we marched on - together.


Just before coming home, we encountered one of many blessings bestowed upon us by what must be our Guardian Angel. During his life, he was always the one to give us perspective, always the one to assuage conflict or distress. Always the one to remind us to have faith, to believe in more than ourselves, and give all of ourselves. Always the one to put his arm around you, and tell you confidently, that whatever it was, He would take care of it. Even now, the sound of his voice saying "I'll take care of it" resonates in our minds -- at our lowest, it's his promise that carries us through.

In keeping with that promise, we met a family who had experienced exactly what we were going through. They had a similar horrific accident, except theirs took place in India, and they had a father with a similar spinal cord injury. They knew this condition and all its hardships in a way no one else could. With great generosity, they donated a waveform bed, which would help prevent JC from developing bedsores, and also sold us their wheelchair accessible van . More than providing us with material assistance for JC’s care, meeting this family offered us the reassurance that this condition…these hardships were surmountable. JC would do more than endure- he would conquer his spinal cord injury.

On January 26, 2009, JC came home after a 5 month absence. To greet him with signs, warm wishes, and greatful hearts was his entire family (wife, children, brothers, sisters, nieces, nephews, grandnieces, grandnephews, and friends) . Once home, JC’s devoted wife Grace along with his family, friends, and a home care nurse created a care plan and therapy regimen similar to that JC was receiving at Helen Hayes.

A standing frame was donated by the Testaverde foundation to allow JC to stand and bear weight for a brief period of time, each day. For the next two months, JC received home visiting nurse service, physical therapy and occupational therapy services. Despite the aggressive therapy and hardwork, he was again told that he had “plateued” at the end of those two months.
He then transitioned to receiving care from Burke Rehabilitation Center for outpatient physical and occupational therapies. For the next 11 months, Lovedale Ambulette took him to therapy twice a week and again he worked tirelessly and fought endlessly for every stride forward on this road to recovery. Under the guidance of his therapists, Karen, Jill, Katie, Jeanette and his family members altering his therapy regimen to ensure a constant progression in his recovery, JC improved his trunk control and core stability. He regained the ability to extend his wrists, strengthened his upper extremities, and learned to maintain sitting at the edge of a mat and transfer to and from his wheel chair using a sliding board. He was also able to pick up objects such as blocks and golf balls. He exceeded all expectations, but eventually, he was told that he had 'plateaued' once again.


He was not ready to relent so we pushed on. See, what they could not know is that, JC, would never stop working hard. Knowingly or unknowingly, JC, as he so often does, put aside his frustrations, his sadness, his pain, his fatigue, his weakness, and focused on getting better not only for himself, but for Us. With each improvement, each step forward, JC fused together the broken pieces of our heart. In him we sought vindication. In him we sought reparation. It's through his recovery that we pursue the future with an eagerness and hopefulness reminiscent of the past.

IV. LIMITLESS

After much research we decided to try an autologous stem cell treatment. Stem cells would be taken directly from JC’s bone marrow and then injected into the spinal fluid in the hopes that the stem cells would find their way to the injured site and help regenerate the damaged portions of his spinal cord. This procedure was performed at the X-Cell center in Colon, Germany. During our first day in Germany, JC underwent his first blood test to ensure that he was free of any infections. Once cleared, JC was given a day of rest, which was followed by a bone marrow collection. The doctors were able to collect 20 tubes of marrow (more than a sufficient amount for the treatment). He quickly recovered from the stem cell extraction procedure and was ready for the next phase of the treatment.

The following day, the doctors performed a lumbar puncture and injected 5 million healthy stem cells into his lower back. (only 2 million were required for a successful injection)! It was at this point that we all prayed and hoped that the healthy stem cells would divide and differentiate into spinal cells, and then repair the damage to his spinal cord.

After one final MRI, doctors concluded that JC indeed had an incomplete injury with a 1 centimeter connection of the spinal cord that still remained. The doctors all instructed us that stem cells would not work without intensive exercises and retraining of the extremities into normal patterns of movements. We decided that Project Walk in Carlsbad, CA would offer us the most hope.


V. RISING TO THE CHALLENGE:

At Project Walk we found a dedicated team of trainers who in 2 weeks helped JC become so much stronger. His trunk strength, arm strength and leg strength improved exponentially. For the first time in two years we saw that if he thought about it and really connected his thoughts to the movement he desired, he was able to move his leg ever so slightly. As time went on we saw these movements become more pronounced. He was getting stronger and stronger. At Project Walk, we witnessed first hand their unconventional methods of treatment, their exceptional dedication, and their amazing ability to motivate people to achieve their highest potential. JC tolerated 5 hours of therapy a day and we learned a whole new set of intense exercises, the importance of repetition, and learned that JC was able to move and control his body in more ways than we could ever have imagined.

In just those two weeks we were able to get rid of the abdominal binder and maintain a normal blood pressure without the use of medications. We were able to wean him off all his major medications such as baclofen, mididrine, colace, and lyrica. Additionally, he did not require a hospital bed and only required the assistance of one person to turn at night. After the two week program and doing the, “Train Your Trainer” program, we were able learn all the exercises and continue this intense exercise program at Athlete Evolution.

Currently, JC goes to Athlete Evolution twice a week, and each week he gets stronger and is able to do one more thing that he was unable to do the week before. We fully believe that he has potential in him to walk one day. He will.

JC continues to work hard, and partakes in a robotic study for the both the wrist and hands. The robotic study entails a full ASIA exam both before and after the study. It requires 18 sessions for both wrists and now the hands. At the end of the 18 sessions for the wrist the doctor did the ASIA scale again on him, and when asked to move his legs JC was able to, and his diagnosis changed from an ASIA A (complete injury, no sensory or motor function below the level of injury without sacral segment sparing at S4-S5) to an ASIA C (incomplete; motor function is preserved below the neurological level and more than ½ of the key muscles below the neurological level have a muscle grade 3 or more). In short, we are getting closer and closer to that day.

JC continues to make tremendous progress towards his goal of walking again. We hope to go back to Project Walk in Carlsbad, Ca this summer for a 6 week program. And we're happy to have you on this journey with us.

Let's keep going.