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Sydney, 11

Richmond | Services: Hematology/Oncology

A Lifetime Journey

Before her daughter, Sydney, was born 11 years ago, Karima Williams helped care for a friend’s child with sickle cell disease. A carrier of the sickle cell gene, Karima did not have the disease but quickly became familiar with the inherited condition while caring for her friend’s son. Three days after Sydney’s birth, Karima heard the same life-changing diagnosis for her child.

Sickle cell disease is characterized by abnormal hemoglobin, which is a protein in the red blood cells that carries oxygen throughout the body. It affects the shape of red blood cells, causing blockages that slow or stop blood flow and prevent oxygen from reaching the body’s tissues, which can cause sudden and severe pain attacks and damage to organs including the spleen, brain, eyes, lungs, liver, heart, kidneys, joints, bones and skin. It also lowers the immune system and causes fatigue.

“I knew it would be a journey,” Karima recalled of her feelings after Sydney’s diagnosis, “but I didn’t know what her case would be like.”

The Journey Begins

Sydney, who has the most common and severe form of sickle cell disease, began regular visits to the ASK Pediatric Hematology and Oncology Clinic at Children’s Hospital of Richmond at VCU (CHoR), which follows about 300 children annually with the condition. For the last nine years, Sydney has taken a daily medication used to increase her hemoglobin count and prevent serious complications.

Even with medication, Sydney, who has two brothers, is susceptible to illness since a fever or cold can turn into pneumonia, which she’s had 25 times. She doesn’t react well to extreme temperature changes, and she has to avoid over-exerting herself, something that can be difficult for the energetic fifth grader who enjoys cooking, reading and drawing.

“She has to be reminded to slow down,” Karima said, “because too much activity tires her out.”

A Regular Routine

Sydney has quarterly check-ups at CHoR where the clinic team checks her blood, monitors medication dosages, discusses overall health issues and ensures she’s getting extra assistance when needed from the clinic’s social worker, educational consultants, chaplain and psychologist.

“The hardest part of sickle cell disease for patients and families is the unpredictable nature of the disease,” said Jennifer Newlin, MHS, PA-C, who has known Sydney for six years. “We try to help them through those times.”

Those times include the frequent hospitalizations Sydney tends to have in the fall and winter as germs increase and temperatures change. She may miss weeks of school, requiring homebound instruction after discharge, and be so weak she can’t get out of bed.

Despite these challenges, Sydney loves to laugh, has a contagious smile and makes friends wherever she goes. She said she likes the team at CHoR and “how they’ve gotten better at giving me IVs.” She giggles as she recalls the pretzels and popsicles she gets in clinic and the therapy dogs that visit CHoR’s inpatient unit.

The specialists at CHoR “are absolutely wonderful,” said Karima. “They know my child and every aspect of her life. They are my second family.”

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