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This fundraiser ended on 05/05/12

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Family & Friends of Jeff and Shaunny Oliwek are raising money to help with expenses for their 11 month-old little girl, Aimee Leigh.

Very early in the morning, 2 days before Christmas, we took Aimee to the ER at Ellis hospital in upstate NY. She had begun to have some minor twitching in her left hand and foot, and this was not normal. She spent 5 days in a Pentobarbital coma, and on a ventilator to stop the seizures that were ravaging her body and brain.

All the tests were coming back normal, and no one could tell us what we were looking at. a clinically healthy little girl... with something very, very wrong inside.

On March 20th, 2012, we were told what we were facing. Alpers Syndrome...

Background Story
Alpers is a non-reversable, always fatal disease that is a product of a mutation in the POLG (polymerase gamma) gene that is responsible for mitocondrial dna replication. eventually the mitochondria, which are the power plants of the cells, cannot function properly and they start to fail. usually in the brain and liver, which are the 2 most energy dependent organs in the body.

Death usually comes quickly, with many children dying before the diagnosis is found. On average the children stricken with this disease do not see the 1 year mark after the initial presentation.

Aimee had faught the Status Epilipticus style seizures for almost 12 hours before the pentobarb got her deep enough to stop them. and she was woken up only days before we had gotten the transfer to childrens national in DC. Her and mom flew down on a plane, while our older children, both cats and myself drove down to DC.

She stayed in CNMC's neuroscience floor for almost a month before they transferred her to HSC, her current home. A few weeks ago she was rushed back under suspicion of a seizure. this was found not to be the case, however they saw a lot of seizure background noise. before she transferred to HSC at the end of january, they took a muscle biopsy to test her DNA. and that is how they found the POLG defect, and its telltale mutations that point to Alpers.

I have encountered a family that has been down this road, and they are helping us in whatever way they can, from 2000 miles away in Colorado, and i found them by searching for the name of the disease Aimee has. they seem really caring and really and genuinely interested in what is happening.
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