Sydney Williams loves to laugh and is known for making friends wherever she goes. Her positive spirit and great personality are among the many reasons certified physician assistant Jennifer Newlin nominated her for our 2016 calendar.
Sydney has the most common and severe form of sickle cell disease. She’s been coming to the ASK Pediatric Hematology and Oncology Clinic at CHoR since she was diagnosed with this inherited condition just three days after she was born. Newlin is one of multiple specialists on Sydney’s care team and has worked with her for the past six years.
Sickle cell disease affects the shape of red blood cells, causing blockages that slow or stop blood flow and prevent oxygen from reaching the body’s tissues. The disease can cause sudden and severe pain attacks and damage to organs. It also lowers the immune system and causes fatigue.
Sydney takes daily medication to increase her hemoglobin count and prevent serious complications, but even with medication, she’s susceptible to illness since a fever or cold can turn into pneumonia, which she’s had 25 times. Her body doesn’t react well to extreme temperature changes and at times can be so weak that she can’t get out of bed.
“The hardest part of sickle cell disease for patients and families is the unpredictable nature of the disease,” Newlin says. “We are here to help them through those times.”
Sydney has quarterly check-ups where the clinic team checks her blood, monitors her medication, discusses overall health issues and ensures she’s getting extra assistance when needed. Support from a team that knows her well can be especially helpful during the frequent hospitalizations and weeks of missed school she tends to have in the fall and winter when germs increase and temperatures change.
The specialists at CHoR “are absolutely wonderful,” Sydney’s mom, Karima, says. “They know my child and every aspect of her life. They are my second family.”
And those of us at CHoR who’ve had the opportunity to get to know Sydney think she’s pretty wonderful too. We are so thankful this joyful and inspiring 11-year-old chose to brighten our calendar with her contagious smile.
The “Meet our Calendar Kids” blog series highlights children featured in CHoR’s 2016 Tid*Bits calendar. Join our mailing list to receive future issues of the Tid*Bits calendar and newsletters. We hope you’ve enjoyed getting to know Sydney, our featured patient for November 2016.
Information contributed by Children’s Hospital Foundation