Dr. Linda Rozell-Shannon, PhD President and Founder
The doctor asked my parents, “Do you have additional questions?”
Is this diagnosis common? No.
Will Mallory grow out of it? No.
Can you treat it here? No.
Is there a cure? No.
I have heard a lot of no throughout my life.
I was born with a Vascular Malformation. My left arm, from my axila to my fingertips, is filled with extra veins that are knotted, bulging, and misdirected. I have little to no muscle in my forearm, and my bones and ligaments have grown abnormally, leaving me with a shorter arm, smaller hand, and contractures that limit my flexibility and grip. The decreased vasoconstriction means stagnant blood, causing me extreme pain and discomfort every single day. There were few treatments for Venous Malformations of my severity. After consulting with physicians, my parents decided sclerotherapy would be most beneficial. Just like anything else in the medical world, complications are possible. In my case, the complication presented itself as a severe compartment syndrome, a life threatening emergency requiring immediate surgery or risk of losing complete use of my arm. Once the hospital staff detected the emergency complication, I was whisked off to the operating room. What was initially to have been a twenty-three hour observation procedure ended up as a two-week hospital stay with five trips back to the Operation Room to attempt to save functionality of my arm.
The compartment syndrome left me with permanent nerve damage and ongoing pain. A daily dose of aspirin and a joint compression garment have become a permanent addition to my life. Given a choice, I would not have ever asked for these differences, however, both are now a part of my lifestyle, a lifestyle I would prefer over a total loss of an extremity. These have simply contributed to the person I have become.
As a child, I was terrified of needles. Add in my surgical complications and one might suppose that I would run at the sight of a hospital. My experiences have had the opposite effect. While my dream was never to become a physician or nurse; my love of math and science is leading me to a possible career in biomedical engineering where I hope to convert my understanding of pain and suffering into real solutions that help others overcome their own obstacles. My physicians recommended limited participation in sports due to the severity of the malformation another no. While I did not participate in volleyball or basketball, my parents wanted me to be a normal kid and directed me to sports like swimming and soccer. I graduated from high school with eight varsity letters and have been recruited to play soccer in college. I have silenced the naysayers and am fulfilling my dream. My hard work academically and athletically have paid off and I will proudly represent Rice University, a university known for its engineering program, as a Student Athlete beginning in the fall of 2014.
My arm helps to define who I am. Not in a way that holds me back, but as one who is able to persevere through the most difficult of times, as one who is able to see past the pain and as one who finds the positive in any situation. When people ask if it holds me back, I cannot help but say no, it absolutely does not.
The Vascular Birthmark Foundation has helped me continue my education, so I can come closer to achieving my life and career goals. Please help me raise money for the organization that helped me attend Rice University, a prestigious institution, so they can continue to aid other people like me who also have a vascular birthmark.