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Harley is a five year old girl who suffers from hydrocephalus, agenisis of the corpus callosum, seizure disorder, asthma, neurogenic bladder, dysphagia , cerebral palsy, blood clotting disorder, tethered spinal cord, failure to thrive and many other neurological conditions. She has had some genetic testing done and the results showed some duplications but the Dr's at her local hospital aren't sure what to make of it. She is also suspected to possibly have mitochondria. This summer she suffered many strokes and hemorrhage in her brain. She has a feeding tube, nebulizer, vp shunt and due to her neurgenic bladder has had a monti and mace procedure done where she is catherized every 3 hours through her abdomen for urine and her bowels. She has never walked and is wheelchair dependent. She is currently on 23 daily medications. Despite it all she is a happy, smart and determined girl who just wants to be like her peers. She is in kindergarten but due to her lengthy hospital stays she is unable to attend school and is on home bound school where her teacher comes to her home. She is at her local hospital 2-3 times per week for clinic appts and therapies when she is not inpatient. This last year she has spent more time in the hospital than at home. During the last 2 weeks she has had 4 brain surgeries and that is her most troubling problem right now. With her hydrocephalus she has developed slit ventricle syndrome possibly from over drainage of her shunt her short 5 years of life. Due to that her brain is collapsing around the shunt tubing and has caused 9 shunt malfunctions so far since June of this year. We live in Indiana and there is only 1 children's hospital that can treat her in that state. 2 years ago her Dr's at that hospital told us they didn't know how to treat her and suggested we look elsewhere. I started doing that and she has had surgeries at Miami Children's Hospital and Lurie Children's Hospital of Chicago. They have saved her life when her home hospital was unable to but were only able to do so by her going there through their emergency room to be treated. I (mom) am disabled and Harley is on SSI and has disability medicaid for insurance. Due to this her insurance will only cover her in the state she lives in except for emergencies. These Dr's at these two hospitals and Monroe Carell Jr. Childrens Hospital in Nashville have all said they could diagnose Harley and treat her and help her long term but she would have to live there for it to be covered by insurance. I have been trying to relocate for this reason the last 2 years but unable to due to financial burdens. As I stated before I am on disability and Harley is on SSI and I also have 3 other children at home so my funds are limited. Harley is in what I would call a downward spiral because she can not get the proper treatment at home. We desperately need to move her asap before anything else happens to her. Of the 3 hospitals I mentioned they are all great and could save my baby girl if she lived there. I if given a choice would pick Miami Children's Hospital because they know her well and the warm weather is better for Harley and myself. The cold weather really takes a toll on her and she is run down all winter even when not in the hospital. Thank you and I pray you can help because we really need a miracle. https://www.facebook.com/MissHarleysAngels
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