Victoria is my only sibling and it is so hard seeing her in so much pain. Normally when I come home to visit from college she teases me and gets on my nerves, like little sisters do, but lately she has not had the energy. She is very strong for her age and even when she is in so much pain she still does her best to remain positive and smile. I love her so much and it is hard to see her in so much pain especially because there is nothing I can to help ease it. As anyone can image with any rare disease it was not an easy road even getting her diagnosed. There have been so many back and forth doctor visits and severe pain, that has affected her education. Victoria is so scared she won't be able to graduate from eighth grade in 2019 because of how much school she has missed and continues to miss. But I believe with her strength and my support and the support of our family she will get through this. Thank God her school has been understanding and is working with her to make up for time missed.
Victoria became ill in late August with left back pain. Initially her first urgent care visit stated it was a pulled muscle and they sent her home. Over the next couple of weeks she was not getting better, in fact she was getting worse. Then they started looking at her kidneys and realized there was something going on there. My mom had to pressure the doctors to give her a CT Scan (at the advice of another doctor). The CT Scan showed some compression of her kidney and was then diagnosed with Nutcracker Syndrome. Next my sister was referred to nephrologist (which is a doctor that specializes in pediatrics that concerns the kidneys). That doctor wanted my sister to not only wait two years to see if she would grow out of it but also put her on pain management. My mom insisted on the nephrologist researching other options because what mom would want their 13 year on pain medication for two years. Since Nutcracker Syndrome is a rare disease there are not very many doctors that treat this condition or even know much about it let alone specialize in it with children. Her nephrologist discovered Dr. Hans Sollinger in Madison Wisconsin (the closest specialist) and reached out to him. After discussion with Dr. Sollinger it was determined that we would need to take Victoria to Wisconsin to be evaluated for a possible procedure where her kidney is treated by a special transplant procedure.
As you can imagine this has put a financial burden on my parents. Not only has Victoria missed a lot of school, but my mom has missed a lot of work due to all the urgent care visits, doctor appointments and caring for Victoria when she could not go to school. Although insurance may cover some costs of this procedures, it will not cover travel expenses to get out to Wisconsin. The first visit would be 3-4 days for evaluation and then possibly another visit for about a month if she does require the transplant surgery. The money that is collected would help my parents with Victoria's medical and travel expenses to and from Wisconsin. They are trying to seek help to assist with travel but they aren't sure how much assistance they will get or if they will even get it. I am setting up this gofundme because my parents need help and unfortunately I can't help (broke college student) so this was the one way I felt I could help them.
Any help is much appreciated and thank you for allowing me to share Victoria's story.
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