Kennedy’s fight against OMS
“You don’t have to, you get to”
Last year, November 10, 2019, the Kaye family was hit with every family’s worst nightmare. Kennedy was a “normal” 22 month old & woke up one morning very off balance, her eyes were twitching, and she was shaking.
They were admitted overnight and did an EKG on her brain (to look for seizures) and an MRI (to look for tumors). Both tests came back negative. The neurologist thought it was celebellar axtaia, which is inflammation of the brain that attacks your balance and can be caused by a virus and normally goes away within two (2) weeks.
They got a second opinion with one of the best Neurologists in central Florida, she ran numerous tests to try and figure out what Kennedy had. Everything kept coming back normal!
At this point and time Kennedy had lost the ability to walk, talk, sit, developed severe rage and behavioral issues and the list goes on. The neurologist sent them back to the hospital which is where they met Kennedy’s current neurologist who has been determined to help Kennedy!
After countless hospital stays, two (2) spinal taps, four (4) MRIs, two (EKGs), tumor scans for tumors, countless blood tests, the list goes on. He came to a conclusion that she “had” autoimmune encephalitis with zero antibodies as all tests kept coming back negative!!
They started her on strong steroids and IVIG transfusions (super blood). The transfusions alone are $10,000 monthly and she has been getting them monthly since February.
Kennedy’s neurologist is so determined, he recently went to a weeklong international autoimmune conference strictly for Kennedy where he met a neurologist from Boston who specializes strictly in autoimmune and OMAS - they discussed Kennedy and had a Zoom 2.5 hour call & met with Kennedy. The Boston neuro has asked the Kaye family to consider allowing Kennedy to be a part of his research study as he has is own foundation and studies with Harvard. The Boston neurologist has agreed to join Kennedy‘s team with her current neurologist.
Fast forward to now, Kennedy officially has a “name” to her illness. They have dropped “autoimmune encephalitis” she now has Opaoclonus-Myoclonus Syndrome (OMS). It is a RARE disorder that affects the nervous system & brain. It is caused by tumors (50%) of the time OR due to a viral infection. She is due for another full body tumor scan in the weeks to come.
Kennedy’s case is not only rare but one of the most complex they have ever seen because not only does she has EVERY single symptom of 0MS but she has it x10 stronger than a normal case of OMS.
She has to continue “super blood” monthly which is $10,000 and they are adding Rituximab, which every six (6) months and costs $100,000.
Unfortunately the nurses are having a hard time finding a vein for her transfusions because they are so damaged. They want her to undergo surgery to insert a port in her chest to make the transfusions easier.
The amount of stress they are under with their baby girl being sick and the amount of money it has to take to keep her going is something I would not wish on my worst enemy.
This could be LIFE long or maybe out grow it in YEARS to come!
If you would like to assist in their financial burden, any donation would be greatly appreciated. All funds will go directly to Kennedy’s medical expenses.
Many have asked how you can help. If you are not able to donate please just share Kennedy’s story. It would mean the world to them. ❤️
On behalf of Dana, Matt, Kennedy and Kylie , I appreciate the outpouring of love, prayers and support shown over this process.