Latest update as of Jun 18, 2024

  • 06/17/2024: An Update from Divina

    Robert is excited to report that during physical therapy today, he stood on his feet for the first time for one whole minute while weeping tears of joy! He made his two physical therapists also weep. They had an absolute tear fest! After a little break, he stood again for another minute.

    Things are tough, but he fights for every step forward. His swallowing is getting better. He can open his eyes now, but he still has double vision. His shoulders do not have a full range of motion and he is unable to lift his arms all the way up.

    I continue to read all your messages every day and Robert is so appreciative. They give him encouragement to endure and are crucial to his healing. Thank you all SO much!

    P.S. Last Wednesday, Robert was transferred to an acute rehabilitation facility with an estimated discharge date of July 23.


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

Organizer
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This fundraiser will directly support

Divina Koonce

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Beneficiary