Agnes of the Corpus Collosum. The Corpus Collosum is almost completely missing or missing. This is the middle part of the brain that controls communication between the right and left hemispheres. Juliana has abnormalties in other sections of her brain Aicardi syndrome causes many different types of seizures that are very hard to control. Juliana has had more then 200 seizures in 24 hours. This is how it will be for the rest of her life, there is no cure! She has a gtube ( feeding tube) in her stomache all her food and medicine go into the g tube. She can possibly aspirate if given any liquid orally. ( go into her lungs). Juliana may never be able to walk, talk or see. She may never be able to care for herself. We haven't seen her smile. She needs equipment that insurance will not pay for. At this time she is in dire need of a customized helmet that helps keep the shape of her head correct. There is noticeable difference on one side, her eye and ear have shifted. She has to have the helmet to correct this plus keep the shape of her head. The helmets price is almost $2000.00. Juliana has many doctor and therpy appointments each week, the drive for these appointments are a hour or more. So cost of transportation is also an issue. Juliana will most likely be in a wheelchair for part or all of her life.Julianas father is working 2 jobs to try and meet all the needs of his faimly Julianas parents have lost their home and are residing with faimly because of ever increasing medical expenses.
The approximate number of documented cases of Aicardi in the world is 4000. This syndrome affects only females with the exception of one male because of chromosomes. This syndrome is very rare. Please open your hearts to help this little baby girl get the equipment she needs to improve her life.
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