"Heroism. The endurance for one moment more." George Kennan quoted this in the McClure's Magazine in 1908. He described a hero not as someone who always takes charge, but as someone who simply remained strong during hard times. Niemann-Pick Type C, commonly known as Niemann-Pick, is a lysosomal storage disease that deals with the NCP1 and NCP2 genes. This disease begins to affects 1 in every 150,000, with one of them being Alex. She grew up just like her peers, a carefree kid, until the age of 10 when Niemann-Pick took over. Alex has always been a part of my life, and looking back she has always been my hero, even before I knew it myself. My personal hero, Alex Ulrey, reminds me of who I want to be, stays positive through hard times, and inspires others to do the same.
Despite her handicapping disease, she continues to make a connection with those around her. The effects of Niemann-Pick include the loss of mobility and speech, which has resulted in her wheelchair dependency. I took communication for granted before she became affected and lost most of her speech. Even though its hard for her to say simple words such as, yes or no, she continues to maintain some level of connection. Her extra effort to connect with everyone reminds me that it is important to stay in touch with the people in my life. Alex also reminds me to be grateful. Her position shows me how important every aspect of life is. Niemann-Pick has handicapped her life in all ways. It is a struggle for her to do simple tasks such as eating, however Alex is always grateful for her minimal mobility, and reminds me to be grateful as well.
Growing up, she used to watch over me, and now, I watch over her. Alex continues to stay positive through the disease. I can not imagine the hardship it has put on her life, but she continues to smile. Since the disease started to take over when she was a kid, it has grown progressively worse. This past year Alex celebrated her 22 birthday, making her one of the oldest survivors with the disease. At this point there is not a lot of research about Niemann-Pick, and therefore doctors can only guess what the next step for Alex and other Niemann-Pick patients will be. Although Alex's life is based on a schedule of when to take medicine and when to eat, she stays positive about the future.
Alex radiates her positivity and it spreads, inspiring everyone around her. The Race for Adam is an annual 5k that is designed to support Niemann-Pick patients, where all proceeds go towards research for the disease. Every year Alex attends the race as an inspiration to all the participants. Before becoming severely handicapped, she would often say a few words to everyone to start the event. I have always been a part of the race in support of finding a cure for Niemann-Pick. Her involvement in the race not only inspires those participating but also everyone who hears her story. Every time I take Alex somewhere, we run into people that know her and her story. She continues to inspire me every time I see her.
Unlike Superman or Wonder Woman, Alex is not what some people would consider a hero. Niemann-Pick Type C has handicapped her life for the past twelve years, however she continues to be at her best. Alex will always remind me of who I aspire to be, stay positive as life gets harder, and inspire everyone around her. She is a hero, my hero.
Race for Adam
- The Race for Adam Foundation is a strong community organization committed to helping all families who suffer from this rare disease and promoting awareness of Niemann-Pick Type C disease. It is a volunteer, nonprofit association and is recognized by the I
Understanding Niemann-Pick Type C (NPC)
- is a rare and deadly neurodegenerative disease that primarily strikes children before or during adosolence. An inherited cholesterol metabolism disorder, NPC strikes one in every 150,000 children.
- National Niemann-Pick Disease Foundation