✨Josie’s Moyamoya Quest✨
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I am writing to you with great urgency. Our Josie’s life has been radically changed and she needs your help. If Josie has ever touched your life through her performances, energy or friendships please keep reading. If your world has collided with The Wilkas and you want to know what you can do, share this far and wide for our girl.
After recurring headaches and because Josie has multiple blood clotting disorders her doctor ordered an outpatient CT. From that CT the radiologist sent her straight to the ER due to an ‘abnormality’. The ER suspected a very rare and frighteningly deadly cerebrovascular disease—Moyamoya Disease—that has since been confirmed at Cincinnati Children’s Hospital.
Most Moyamoya patients don’t find out that they have this disease until they have a stroke, TIA/mini-stroke, seizure, brain hemorrhage or cognitive decline. Besides the almost daily headaches as the disease progresses, we are beyond fortunate that this was discovered before Josie suffered any permanent damage; it will increase her post-operative outcome.
Moyamoya Disease is an aggressive and progressive narrowing of the internal carotid arteries (ICA) that gives vital blood flow to the brain. To compensate, the brain forms surrounding tiny collateral arteries that can hemorrhage at any moment. Josie has this stenosis/occlusion in her right ICA segments A1 and M1 with surrounding collaterals. The treatment is a very intense, cerebrovascular surgery called STA-MCA bypass. During the surgery they will take an artery from Josie’s scalp and turn it inward through her skull to give her brain new blood supply. After an angiogram to map vessels we will know more about surgical timeline. We have full confidence in her team at Cincinnati Children’s Cerebrovascular Disease and Stroke Center. They will not wait UNTIL the worst happens.
After this life saving surgery she will have a 1 in 6 chance of needing another brain surgery if/when the vessels narrow on her other (left) side. She will be on lifelong medication and require lifelong medical follow up. This surgery costs on average over $250,000 as a cash pay patient—over $1,500,000 when billed to insurance. Right now it appears the surgery and what she will need to fully rehab will be mostly covered by insurance. There will be other out-of-pocket healthcare costs, travel and lodging costs (hospital is 3.5 hours away), lost wages that pay living expenses, recovery aids and costs that we can’t possibly foresee.
We are here to humbly ask if you would share any of those costs with us in our efforts to save our girl. If you cannot give monetarily, please do whatever it is in your world to practice positivity around you. Prayers, meditation, lighting a candle, whatever it is…our powerful collective energy for our girl will have great impact on her spirit and healing.
Josie Wilka is a vibrant 19 year old Owensville High School (Missouri) Class of 2023 graduate and current theater major/ASL minor on the Deans List at Cleveland State University (Ohio). She is quick to help others, loves the outdoors, superheroes, reading, Good Mythical Morning, purple, dogs, thrifting, performing, dancing, spending time with family, Brayden and spreading kindness wherever she goes. She carries a light inside of her and has a kind soul. She deserves a full life and will fight to live it. She knows this is going to be tough but no way is she backing down. The Wilkas have faced much adversity and we aren’t quitting now. Thank you all for reading, sharing and loving our Josie too; updates will be posted here when we have them.
to be near her is a delight
to observe her is a gift
but to truly see her is a treasure
-Josie’s Momma
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Angie Wilka
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Cleveland, OH