Lauren has been bedridden for almost a year now due to cerebral hypotension caused by a spontaneous cerebral spinal fluid leak. This is a rare condition caused by her underlying connective tissue disorder of Ehlers Danlos Syndrome. Basically, our brains and spinal chord float inside a sac of fluids. Lauren has a tear/hole in that sac and fluid is continuously leaking out of it and into her surrounding nerves. This causes her brain to sink and press into the base of her skull causing severe symptoms that have led her to be bedridden. Everyday, she suffers from severe headaches, neck and back pain, nausea, vomiting, and muscle spasms that constantly occur even if she is laying down. If she tries to stand up or sit down for any length of time, she is in agony. So, she spends almost her entire day lying flat in bed.
Lauren has been a talented artist ever since she was a little girl. In elementary school, her teachers were always astonished at the artwork she was able to produce even on little tasks they did everyday. Throughout her years, her abilities as an artist have prospered. This isn’t just a hobby for Lauren, this is her passion. About three years ago, Lauren had decided she wanted to make a living out of her god given talent and decided to take classes at the Academy of Responsibly of Tattooing. She loved every second of learning how to tattoo and even designed her own that she got tattooed on her back. It was not until a few months into school that she had to drop out due to this illness and did not feel well enough to attend the classes. This was heartbreaking for her and our family because she finally found a job where she can put her talent to use. Now, Lauren cannot even draw anymore because of the pain it causes and she is unable to sit up for the amount of time it would take to do one little drawing.
Everyday she is in agony, unable to live the spontaneous and adventurous life every girl should be experiencing in her 20's. Recently, a doctor near us had tried to do a blood patch on where they found leaks, but it was unsuccessful. This was devastating for our family because for once we had hope that she would be getting better. Doctors have been trying for years to find a cure for my sister and figure out why she is feeling this way, but no one could give my family any answers. There is only one person that I am going to give credit to for finding out what is wrong with my sister and also for finding someone who says they can fix her; and that is my determined mother, Jill Gorniak. My mom has stayed up for nights at a time and spent all of her free time researching to figure out what is wrong with my sister, until one day she came across multiple articles that matched all the symptoms my sister was having. She then began her research in trying to find how to cure these spinal fluid leaks and had come across only one doctor in the entire United States that is able to do this procedure to fix them and has had success with every single one. The neurosurgeon is named Wouter I. Schievink at Cedars Sinai in Beverly Hills. Coincidentally this is the same doctor that Lauren's neurosurgeon back in our hometown decided to send her to as her last hope to fix this. If you all do not know, my family currently lives in Warrington, Pennsylvania, completely on the other coast from this hospital. Which is why I have created this account. Over the past few months my mom has been trying to get an appointment with this surgeon for the surgery and has been playing constant phone tag with them and sending multiple emails to explain how severe my sisters condition is currently. It was only until a few days ago that they were able to give us a date of December 5th. One of the main concerns when it comes to this procedure is how much it is going to cost my family especially since we are also unsure of how long this whole process is going to take. It could take as little as two weeks or even months to be completed due to recovery and post check ups that she has to go to. I have heard for multiple nights now my mother and father discussing how much this surgery along with all of the expenses is going to cost them and how they are unsure if they will be able to come up with the money for all of this to actually happen. This broke my heart because I know this may be the last chance we have for my older sister to get better and be able to live a healthy life. So I am just asking if you all could help out the best you can to get my sister out to California to have this surgery and beat this rare condition that has stolen her life. I cannot thank enough the support my family has received from our friends and family. We would be so thankful for any support and prayers!
Thank you and much love,
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