Terminal Brain Disease

On November 13th 2017 my life was forever changed I had received the most heart wrenching news any parent could ever hear your daughter has “leukoencephalopathy vanishing white matter,” a recessive genetic brain disease for six months leading up to the day my daughter Zoe was diagnosed they had suspicions but I was hopeful they were wrong but they weren’t. There’s no other way to put it my 4 year old daughter is dying. Every single day seeing my daughter rapidly lose the ability to do everything makes my heart bleed. Nothing soften the blow that you’re child has a illness you cannot fix.

Zoe has such a beautiful soul and amazing heart and her smile can warm anyone’s heart. She was just like any other child, loved being outside running, playing, singing and dancing but one day she started to become unbalanced and fall. It took two years of countless concern doctor appointments and numerous tests for Zoe to be diagnosed. VWM is a fatal condition that robs normal children of everything. With VWM being extremely rare and only 250 cases worldwide we were given no hope. This condition destroys myelin the brains white matter in doing so it permanently affects transmission of brain signals to the rest of the body. In a short amount of time it causes inability to walk, talk, eat, and also unable to sit and use their hands. Zoe has already lost ability to walk or stand she also can’t balance and needs assistance with every day things. So at this point her disease is progressing rapidly and her medical team is doing everything to make her comfortable and enjoy the time she has with us. We’re asking for any possible donations to get my family through this time whether it is for travel expenses, medical expenses and other big expenses that are yet to come.

Zoe also has a little brother who is almost 11 months old. Cobain will have his genetic tests done February 8th. So keep Cobain in your prayers as well.

Thank you so much and please pray for a miracle for Zoe.
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Ashley Castorena 
Bakersfield, CA