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ASK Blog

Stories of Making Life Better for Children with Cancer

Meet ASK kid Shania

9/24/2019

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Shania Gordon is creative, a dancer and loves to be outside exploring and seeking new adventures.  That’s why Sickle Cell Anemia can’t get in her way.
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“Every morning and every evening, I take medicine to help reduce the number of sickle cells my body produces.  That gives me energy and allows me to walk and dance,” explains Shania.  “If I have a crisis – when I have too many sickle cells in my bloodstream – then I go to the hospital for blood transfusions.  Sometimes I have to stay a few nights before it’s under control.  I miss my friends when that happens.”
 
This is when ASK is most helpful to Shania and all the kids at the ASK Pediatric Oncology/Hematology clinic. In fact, Shania bubbles when she talks about clinic. “I’ve been going there since I was born, and all of the people there are my family."
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Shania's 2018 Kourageous Kids Portrait.
“I have tons of friends in clinic, people like me who understand what I’m going through, if I’m in pain and help me through my treatments.  I love ASK Camp and learning new things, and camp is staffed with folks who understand the little but very important things about my treatment, like how it’s vital that I stay hydrated and out of the hot sun.”

Shania’s mom, Tai, echoes her daughter’s sentiments about ASK.  “This is a wonderful community for sickle cell patients and their families.  We have so much support.  There are so many unknowns with sickle cell and ASK has been an incredible resource for us.  It’s important that everyone involved in Shania’s care be open minded and willing to do the research necessary to stay on top of sickle cell.  The ASK clinic is that place to help families navigate very confusing and complicated diagnoses and treatments.”
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Shania volunteering at ASK Summer Camp 2019.
“I like being part of the process,” says Shania.  “Now that I’m 14, I need to understand what’s happening and what I need to do to help myself.  Sickle cell is a roller coaster because I don’t know what’s going to happen when I wake up.  Sometimes I have weird pains and I have to miss school.  Not many people know why I’m not in school, but my close friends get it.”

Shania is showing everyone that living with sickle cell anemia is possible – her infectious smile inspires us all!
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Shania and her mom, Tai, at the 2017 ASK 5K Donut Run . 
Sickle cell disease is a genetic condition that affects the body’s red blood cells. It occurs when a child receives two sickle cell genes—one from each parent. In someone living with this disease, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle”. When sickled red blood cells travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious problems such as infection, acute chest syndrome and stroke. The pain experienced by people living with sickle cell disease can vary in intensity and last for a few hours to a few weeks. Source: U.S. Department of Health and Human Services
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