Alek is a courageous patient whose journey with severe kyphoscoliosis led him across the globe to Nemours Children’s Hospital, Delaware.
Kyphoscoliosis is a dangerous condition that affects the spine. It causes an abnormal curve in two directions, side to side and front to back. It is a combination of two other conditions: kyphosis, which causes a severely rounded appearance of the back, and scoliosis, where the vertebrae form a curvature instead of being straight.
Alek’s diagnosis unfolded in Poland in 2010 when he was a young boy. The road ahead seemed daunting as his condition gradually worsened. “Before starting treatment at Nemours Children’s, Aleksander’s condition was very bad,” shares his family. “He had trouble with breathing and couldn’t eat and walk. He lived in chronic pain.”
It wasn’t until after a failed operation in Poland that Alek’s family discovered Nemours Children’s. Referred by their physician in Poland, Alek and his family were directed to Nemours Children’s Hospital, Delaware and the Spine and Scoliosis Center, which specializes in complex spine procedures. With the help of Nemours Children’s International Medicine Program, they embarked on a journey that would change Alek’s life forever.
Under the care of Dr. Suken A. Shah and the esteemed orthopedics team including associates from nursing, physical therapy, and Child Life, and many more, Alek found expert guidance. “The individualized, comprehensive, and professional approach of the doctors, nurses, and clinicians was incredible,” shares Alek’s family. “The team provided detailed explanations of the treatment procedures, giving us confidence in their care. We are very grateful to everyone involved for saving our son’s life.”
The impact of Nemours on Alek’s life is nothing short of extraordinary. Thanks to the transformative treatments, Alek’s quality of life has improved dramatically. Though Alek’s case was exceptionally complex, his team put together a series of interventions tailored to his unique needs, including a halo gravity traction, posterior spinal release, and spinal fusion surgeries. The latest in innovative technologies for complex spine surgery in the operating room where employed. These treatments, along with post-surgery rehab to strengthen his core, balance and walking tolerance, not only alleviated his chronic pain but also restored his ability to breathe, eat, and walk with newfound freedom. He can now embrace the joys of being active and enjoying each moment in his life.
Dr. Shah shares that Alek’s case was like directing a film—a complex, multi-character narrative with a happily-ever-after ending. “It is a pleasure to work with such a talented team: passionate and persistent from start to finish. The credits for this film would roll for a while!” Alek himself contributed to this cinematic journey by gifting Dr. Shah an Oscar statue after his surgery. Now, that Oscar sits prominently on Dr. Shah’s desk.
Looking ahead, Alek and his family remain optimistic about the future. Because of the complexities of his case, they plan to continue his care at Nemours. Supplementing with rehabilitation and massage sessions in Poland, Alek and his family will have yearly consultation visits at Nemours.
To those navigating a similar path, Alek’s family offers this advice, “Nemours is the best place for cases like ours. If you’re facing challenges similar to ours, don’t hesitate—take action and seek the expert care available at Nemours.” At Nemours Children’s, we stand committed to serving children and providing compassionate and comprehensive care to families near and far.
