My fundraiser is about raising money and awareness towards childhood RND.
Three years ago when I was in fourth grade, I got a virus. This virus wasnt just any virus. It opened a two year door that really changed my life. The virus gave me a salivary gland infection called parotitis. I went to the hospital and was given a medicne that stopped the pain for an entire year! I thought everything was over, but I was so wrong. In fith grade, my parotitis came back. I was diagnosed with juvenile parotitis, meaning I would keep feeling pain until i was around thirteen. This was wrong, like many other wrong diagnosis that were in my future. I won't go on to list all of these random viruses and diseases that were wrong and bore everyone, but around feburary in fith grade, I met my other miracle worker, (besides my mom and dad) Dr. Sherry. He told my mom and I that I had RND in my cheek. Reflex Neurovascular Dystrophy (RND) is a painful neurovascular disease that constricts the blood veins and reduces the supply of oxygen to the skin, muscles and bones. RND is the pediatric version of Reflex Sympathetic Dystrophy (RSD). This lack of oxygen can cause acid to build up, causing new pain that is then sent back through the cycle to cause the neurovascular nerves to constrict the blood flow again. If untreated, the pain caused by RND can become so severe that it interferes with the patient's ability to move the affected body part. I got lucky and got it in my face and not a limb, otherwise it would have been a lot harder to get through. The only cure is not a pill or drug. It is desensitization, (which for me was rubbing and tapping my face) and support from my friends and family. I was told to go to occupational therapy once a week. We did this for two months, but nothing happened. That was when I was told over the summer that I was to go into Dr. Sherry's program at CHOP. For three weeks, I went to CHOP every single day and participated in OT and PT for seven hours each day. With the help of Doctor Sherry, my iPod, family, and a few video chats with friends, I completed the program in 3 weeks, completly cured.
My goal is not just to raise money, but also awareness, because RND is not very well known to many people. I think that more people should know about it because it is not uncommon for children to get RND. RND is something serious that should be known about world wide. I am not just running for me, but for my family, and other kids and their familes who have RND and for the children who are like me and are suffering many wrong diagnosises and are in the middle of a big journey like mine. The program was life changing and I left a different person. Misdiagnosis is serious. I was put on many different medications that really messed with my head. If there was more awareness, less kids would be misdiagnosed.
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PO BOX 7762
WILMINGTON, DE 19803
The Childhood RND Educational Foundation, Inc, a 501(c)(3) non-profit organization dedicated to educating health professionals and families.
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