The doctors that are on her case right now are very confused as they have never seen a case like this. Hydrocephalus is a disease where there is water on the brain, making the brain larger than the skull. Microcephalus is a disease where the skull of the baby is smaller than the average. As far as this duplication goes, there has been little research on Chromosome 15, but out of all the alleles few have been researched including gene 21, and the doctors don’t know how this might affect her development. The doctors say that as far as the can tell Aveline is the only child in the world to have all three of the diseases at the same time.
On Saturday December 27th, Aveline had “seizure-like” activity, as classified by the doctors, had a high fever, and was spitting up brown goop. On January 1, 2015 she had a shunt placed in her skull through the base of her spine, by an incision in her head and stomach. This is to help drain the liquid from her brain and have it reabsorbed into the body in her stomach. The doctors took an MRI of her brain, and they noticed that there was some damage to the surrounding tissue of her brain. The study at Duke University can help regenerate damaged tissue in her brain, and in other parts of her body. The cord blood was collected by the doctors at her birth, so we preserved the Stem cells that is stored in the cord blood and tissues. These stem cells are embryonic stem cells, and have a high chance of fixing her brain problems, and other problems she may have in the future.
The money we are fundraising for is to pay for the cost of the infusion, which is around $11,000, money to pay for the round trip flight from LAX, to Duke University, room and board while we stay near Duke University, food for us to eat, transportation to and from our hotel to Duke University, rent and utilities so Aveline has a home to come back to as both Mother, and Father will be joining her on this trip, and any miscellaneous things we may need when we are there. We are willing to do whatever it takes for us as parents to ensure our daughter, Aveline has as close to a normal future as possible. Thank you for your support.
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