Latest update as of Jul 28, 2024

  • 07/28/2024: Update from Robert!

    Hi Everyone - it’s me, Robert, sharing with you our latest update! I wanted to write so that I could share with you directly how I’m doing, but more importantly to express my profound gratitude to you all.

    On May 16th, I found myself thrashing on a hospital bed unable to clear my airway, essentially drowning in my own fluids. The disease that was ravaging me was still a mystery to my doctors and I thought my life was at its end. Oddly, I was at peace with that. It’s certainly not that I disdain my life - quite the opposite. I am married to my best friend, have amazing children, my parents are alive and an integral part of my life, and I have a job I love. That interior peace came because of all of you. I knew my family would be cared for and my various projects would continue successfully because of an amazing network of talented, loving people. Thank you.

    On that hospital bed on May 16th, I was given an emergency intubation and from there my body further degraded until it was nearly fully paralyzed. Eventually the doctors discerned the illness (Miller Fisher Syndrome), and I began the arduous trip back into my life never losing a conscious awareness of my surroundings and situation. This has been the most physically and emotionally grueling thing I have ever endured. Your letters, comments, and texts have all been read to me by Divina, even when I couldn’t see, speak, or move. I viscerally felt your presence in my hospital room. Again, thank you.

    Surprisingly, while this has been physically painful, it has been the most spiritually moving time of my life. Early on, when I couldn’t find the words to pray, I simply decided that my pain would be my prayer – an offering for all of you and many others. That simple decision opened the floodgates of grace. The seeming randomness of being diagnosed with a 1/1,000,000 incidence disease became a weapon for goodness, beauty, and holiness. I have so much to reflect on and unpack in the coming months in recalling all this.

    This note is also an update, not just a reflection on the past few months. So here goes. On July 19, I was released from the acute rehab facility, ending 68 days of hospitalization. I am currently living with my parents because they have a bedroom and bathroom on the first floor. It is within walking distance of my home, so Divina and the kids aren’t far away. Physically, my voice remains nasally, my eyesight is still double, my arms have limited functionality, my hands and arms still have intense nerve pain, and I can only walk short distances. But, I can dress myself and manage the bathroom on my own! I can walk longer distances with a rollator (my very own sexy red rollator I’ll have you know) and I have a wheelchair when we are out and about.

    Fortunately, the prognosis for Miller Fisher Syndrome is very good. Nearly all patients make a full recovery and relapse is very rare. I hope to be able to return to work part time by October, but that date is certainly not set in stone. My biggest challenge is endurance. I can walk, get up stairs, and generally move around, but just not for long distances. Continued outpatient therapy and practice at home will help.

    So that’s the update! Thank you to all of you for your support and prayers. I really wouldn’t be here without you.

    Lots of love,
    Robert


About this fundraiser

On May 12, Mother's Day, Robert woke up not feeling well and immediately after breakfast, he asked his wife, Divina, to bring him to the Emergency Room.

His initial symptom was dizziness, which then progressed to weakness in his legs and double vision later that night.  Within three days, his body was in a rapid decline including symptoms of slurred speech, inability to swallow, difficulty breathing, and more muscle weakness that turned into paralysis.  On the fourth day, he was intubated in the Intensive Care Unit.

Numerous tests - blood work, CT scan, MRI, and a lumbar puncture - gave no answers as to what was causing this cascade of symptoms.

Neurologists tossed around a few ideas and based on the symptoms only (with no test results confirming), they began treatments for Guillain-Barre syndrome..  Robert received Immunoglobulin Therapy followed by Plasma Exchange.

A second lumbar puncture later confirmed Guillain-Barre Syndrome with the variant possibly being the very rare Miller Fisher Syndrome, which affects one to two people per one million people worldwide.

Robert has responded well to the treatment, regaining some movement in his arms, hands, legs, and feet.

Having been intubated for fourteen days and not able to fully breath on his own,  Robert went through surgery to get a tracheostomy for continued mechanical ventilation and a PEG tube to provide a means for nutrition.

He has been transferred to a long-term acute care hospital closer to home where the goal is to wean him off of the ventilator.  He is making strides each day, increasing the number of hours breathing on his own - first 8 hours, then 12 hours, eventually 16 hours, and hopefully breathing fully on his own soon.

He will receive some physical therapy, occupational therapy, and speech therapy at the acute care hospital, but will need more aggressive therapy in these areas after he is discharged.

Some symptoms that remain to be resolved are his swallowing and speaking abilities and being able to open his eyes and not have double vision.  He is also experiencing a lot of nerve pain.

All proceeds from this fundraiser will go towards supporting any out-of-pocket expenses his family will incur and any needs they have while Robert recovers and is not able to work.

Organized by

The Koonce Family

Cleveland Heights, OH, USA

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This fundraiser will directly support

Divina Koonce

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Beneficiary