Meet Xander |
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Bio:As a typical teenage boy who enjoys anything to do with robotics, Xander likes eating sushi and staying up too late playing video games with his buddies. In addition to his love of 3D printing and his dream of becoming an engineer, Xander is also a teenager living with sickle cell disease. A serious and lifelong disorder, sickle cell disease alters the shape of the body's red blood cells, causing them to become sticky and trapped in the body's blood vessels. For children and adults living with this genetic disease, blood flow becomes blocked and causes pain, infection and organ damage. Xander's parents learned of his diagnosis when he was approximately 3 months old. He was not exhibiting symptoms at the time, and after the initial shock, Xander's parents decided that St. Louis Children's Hospital, home of the largest sickle cell disease program in Missouri, was the best place to go for his treatment. This is where the family met WashU Medicine hematologist-oncologist Allison King, MD, MPH, PhD. Patients suffering from sickle cell disease can go into a pain crisis at any moment. For Xander, these events have been triggered when his body gets too cold, dehydrated or when he overexerts himself. According to Xander's mom, much of his current treatment is prophylactic. When Xander was very young, he participated in a clinical trial where he was randomized to receive either the medication, hydroxyurea, or a placebo to see if the medication would prevent complications. According to Dr. King, he has been on this medication since the trial and has had relatively few significant complications from his disease. In addition to taking medication to help his red blood cells stay rounder and more flexible, Xander is very diligent at remaining hydrated and taking additional folic acid. At this point his parents are trying to keep him as healthy as possible and educate him on avoiding activities that could trigger a crisis and what the process looks like when he can feel a crisis approaching. While the future is unknown for how Xander's body will continue to handle this disease, the research and progress being made is promising. Xander's medical team at St. Louis Children's is beginning to prepare him for what his care will look like as he matures and explores going away to college after he completes high school. |
Because of You:Xander and his family are grateful for the support they received when he has been inpatient, including Child Life Services and the support from the School Program to help him stay caught up academically. Xander and his family are also hopeful for the future of those living with sickle cell disease thanks to donor-funded research happening by WashU Medicine physician-scientists. |
Watch Xander's Story: |
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