Emily Rowland’s Medical Expenses

My name is Brandi Rowland, from Warner Robins, Georgia and as many of you know, our 18-year-old daughter, Emily has been battling a number of very rare and very severe brain disorders her whole life. The last 10 years have been incredibly hard for her, as well as for the ones who love her. We have watched her condition deteriorate and her life slip away from her. At the present time, Emily has lost the ability to go to school and get an education entirely which is difficult for her to accept, considering she was once a straight A student in all honors courses, with the hopes of one day becoming a lawyer. Her official diagnoses are Generalized non convulsive epilepsy with intractable epilepsy, epileptic encephalopathy and Electrical Status Epilepticcus in Sleep (meaning that her brain misfires more than 80% of her life even during sleep and devoid of triggers and stimulants. Emily's epilepsy is further complicated by the fact that all 4 lobes of her brain are affected, whereas with most patients with seizure disorders, the misfiring is brief and confined to only one or possibly two Her body resists most medications that are traditionally used to stop seizures and encepholpathic episodes. We have also tried non-traditional treatments such as cannabis (which did work phenomenally well until her body started resisting it) , high dose steroids, IVIG, ketogenic diet and she was in a clinical trial using neuro steroids and she has resisted or had negative adverse reactions to these treatments. Because of the amount of seizing and encephalopathy she suffers severe memory loss, both short term and long term, which is one reason she is unable to attend school. Because her brain does not communicate well with the rest of the systems in her body, she often goes into respiratory distress, has stopped breathing, her heart becomes distressed and she has gone into a coma on several occasions and is at great risk for SUDEP (sudden death in Epilepsy) After 8 years and the exhaustion of numerous specialists, We have recently acquired a new team of Epileptologists who are treating her and have recently changed her medications but for the long-term treatment have decided that surgery is her best option. The next step is to implant a VNS device in her chest and run wires up into her Vagus nerve, which will then send electrical pulses throughout her brain. The funds would be used for the cost of travel, lodging, and any procedures or medications that insurance does not cover and her insurance is set to expire July 31. We have thought and prayed about what to do and, because I have been unable to work outside the home for several years now due to being Emily's primary caregiver, we are asking those of you who know and love Emily and are able to help financially to please donate so that we can hopefully get her some much needed relief. Emily is a fighter but too much of her life is spent in pain and confusion and we just want her quality of life to improve and for her to be able to return to a more normal and productive life. There is nothing harder than watching your child suffer physically and emotionally and not be able to do anything about it. Please continue to pray for all of us as this has been a long, heart wrenching journey and we still have a long road ahead of us. There is no cure. We can only hope to find a better way to manage these conditions. It was a tough decision to ask for help and we appreciate the constant love, encouragement and prayers.
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Organizer

Brandi Rowland 
Organizer
Warner Robins, GA
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