Amber Russell’s laughter and bubbly spirit light up every room she enters, but what truly defines her is her incredible resilience.
Amber, 15, manages life with primary ciliary dyskinesia (PCD, which occurs in 1 in 7,500 people), a rare genetic condition that affects her respiratory system. Despite daily challenges, she faces each day with determination and an unshakeable optimism that inspires everyone around her.
A Tough Start: Diagnosing a Rare Condition
Amber’s health challenges began at birth when doctors noticed her rapid breathing. What was initially thought to be a temporary condition escalated to double pneumonia. A referral to Our Lady of the Lake Children’s Hospital led to a diagnosis of PCD, a condition that leaves Amber’s lungs unable to clear bacteria effectively.
Amber’s journey has been supported by a dedicated care team, including Our Lady of the Lake Children’s Health pediatric pulmonologist Jessica Brown, DO, pediatric otolaryngologist (ear, nose and throat physician) Lauren Buck, MD, and her pediatrician Amanda Talbot, MD, at Our Lady of the Lake Children’s Health Pediatrics in Zachary.
“Her care has been a team effort from the very beginning,” says Shannon Zachary, Amber’s mom. “We’ve had to travel to specialists in Texas and St. Louis for her PCD, but having Dr. Brown, Dr. Buck, Dr. Talbot and the team here makes everything so much easier.”
Amber’s treatment includes frequent visits to infectious diseases, immunology, ENT, and pulmonology specialists, as well as regular trips to a PCD clinic. An upcoming surgery at Our Lady of the Lake Children’s Hospital will address blocked sinuses, allowing for better nasal rinses and lung samples to ensure no new infections have taken hold.
A Rigorous Routine to Balance Life and Her Rare Diagnosis
Amber’s days begin with a dedication to her health that many adults would find daunting. Every morning, she spends 30 minutes with a vest therapy device to loosen mucus in her lungs, followed by nebulizer treatments, three inhalers and oral medications. This rigorous regimen repeats three to four times daily.
“It’s a lot for her to keep up with, but she does it without complaint,” Shannon says. Amber balances her complex medical routine with school, maintaining an impressive 3.5 GPA despite frequent absences for appointments.
Amber’s condition has impacted her ability to participate in sports fully, but she doesn’t let that hold her back. She has competed in track events, including the Amazing 5K, where she scored high in her age category. Over time, soccer and volleyball posed challenges due to her need for rescue inhalers and frequent pauses to catch her breath.
“Even when she couldn’t keep up with her teammates, Amber didn’t let it get her down,” Shannon shares. One of four siblings, Amber is an overachiever. “Even when she’s sick, Amber stays positive and determined to do her best in everything.”
Amber’s outlook extends to her aspirations. She dreams of a career in the medical field, possibly working in pulmonology or ENT. As a high school sophomore, she is already looking into college programs at Tulane and Baylor.
“She’s seen firsthand what it’s like to be a patient, and she wants to help others feel less self-conscious and more comfortable,” Shannon says.
Honoring Amber’s Determination
Amber’s resilience shines brightest in her ability to live fully despite the obstacles. From missing dances and milestones to overcoming setbacks in sports, Amber continues to prove her bravery.
On January 17, Amber will be honored as one of Our Lady of the Lake’s Geaux Heroes during the LSU Gymnastics meet against Florida. Her care team and family are unwavering in their support, and Amber’s story is a testament to strength, determination and hope.
