Support Keshun Morgan and Family

I am writing this as a mother, a friend and a prayer warrior on behalf of my son, Keshun Morgan - who is surviving an extremely rare medical condition with life altered as he has known it. Please read our story below; it would mean so much to us if you feel inspired to give or share.

Keshun (my son, age 44) was joyful and healthy until not long ago when he began experiencing odd and alarming symptoms. He had sharp pains in his legs that eventually advanced to other parts of his body. Days would pass, with the pain persisting through work trips, gym visits and attempts to sleep. When the pain spread to his chest, he took himself to the nearest emergency room. They ran numerous tests on him, and all came back negative. Around the same time, his 12-year-old son started getting sick. His 2-year-old daughter also became ill, and the entire house caught the flu-like symptoms. Everyone improved with antibiotics, but Keshun still had a lingering sinus infection.

Keshun felt better as he left for a work trip mid October. On the second day of the trip, he began experiencing some trembling in his legs and became rather nauseous. He woke up the next morning and took a shower. When coming out, Keshun immediately felt dizzy, and his body began to shake uncontrollably. With the help of his wife, Ada, they made it to the airport and made it home. The next day, as the symptoms progressed, she rushed him to the emergency room. After five days at that hospital, Keshun was diagnosed with severe Benign Paroxysmal Positional Vertigo (BPPV) and was instructed to follow up with an outpatient ENT specialist. By this time, the symptoms were barely manageable with continuous medication, as he could not stand or walk on his own without support. His motor skills continued to deteriorate rapidly.

After being discharged, Ada and I took Keshun to the ENT Institute to start treatment for the vertigo. However, the PA-C that saw him referred us to a vestibular physical therapist. That specialist asked that we immediately take my son back to the ER. This expert was confident that it was not BPPV. He had never seen the nystagmus (involuntary eye movement) pattern that Keshun presented as a result of his examination. Within the first 24 hours at Emory University Hospital, more doctors examined Keshun than in the five days he was at the first hospital. After a PET scan, two MRIs, several CAT scans, a spinal tap, and over 60 vials of blood drawn, they found no tumor nor cancer in his body (thank God!). The final derived diagnosis is Adult Opsoclonus-Myoclonus Ataxia Syndrome (OMAS).

OMS is an autoimmune disorder that occurs when the body produces antibodies in response to either an infection or a tumor. OMS produces symptoms such as rapid, multi-directional eye movements (opsoclonus), quick, involuntary muscle jerks (myoclonus), uncoordinated movement (ataxia), and sleep disturbance. OMS is rare and affects children more than any other age group. It is even rarer in adults- one in five million is diagnosed each year.

The biggest challenge with a rare disease diagnosis is limited information about the illness and treatment options. There is no playbook for Adult OMS, and the doctors at Emory University Hospital are doing everything they can to resolve his symptoms though there is no known cure. For now, he has started IV steroids to reduce inflammation, plasma exchange therapy to remove the antibodies and Rituxan to kill off the overactive B cells, but there is still no certainty in his treatment plan.

Keshun is an extrovert to his core- he has “never met a stranger.” He loves traveling for work and with family; he is also a great cook who loves hosting family gatherings. Anyone who has met him would describe him as one of the kindest, most sincere, generous, and funniest people they know. He brings joy to everyone around him and lights up a room with his laughter.

He and his wife, Ada, currently live in a suburb of Atlanta with their two kids. Keshun has worked at CDW for over 20 years, starting as an Account Manager after he graduated from the University of Illinois at Urbana-Champaign (Go Illini!), to now being a Sales and Solutions Manager on the state and local government team. Due to this sudden event, he cannot work for the unforeseeable future, causing a substantial decrease in his family’s income. While he has medical insurance, there are anticipated copays and out-of-pocket expenses. The bills from the first hospital stay have already started to accumulate. Keshun has been at Emory for over two weeks now, and the doctors are unsure how long his inpatient, rehab or outpatient journey will be. Ada has taken time off her retail management job to be by his side and has already used all her paid leave. My daughter and I have flown to Atlanta from our homes in Florida and Illinois to help with the kids and take turns providing comfort to Keshun while working remotely.

Keshun is making small wins weekly, and we pray for his continued progress. We also hope that a cure for OMS is discovered in the future. I implore you to look up OMS and see just how little information pops up- no matter the platform (i.e., Google, Twitter, YouTube and the National Institute of Health (NIH), etc.). Because of this, Keshun has happily agreed to support the medical team at Emory by documenting his condition and journey in hopes of helping other adults with OMS. Many have asked how they can support the Morgan family during this challenging time. We are asking for help with humility and gratitude. Your kindness and generosity will assist with not only medical expenses for Keshun, but essential family expenses as well.

Thank you for all your prayers, calls, messages, and love for Keshun and his family. We all read him your messages daily, and he’s always so grateful for all those who continually check in on him and send daily prayers. We appreciate whatever you can give during this time, and if not, please continue to pray for Keshun and his family and share our message.

#FundOMSResearch #KeshunMorganOMSJourney #CureforOMS