Center for Thoracic Insufficiency Syndrome Patient Stories
1 - 10 of 17
Skeletal Dysplasia, Thoracic Insufficiency and Pulmonary Hypoplasia: Klaire’s Story
Skeletal dysplasia and thoracic insufficiency syndrome led Klaire to have severely underdeveloped lungs. Expert treatment at CHOP has helped her thrive.
Neuromuscular Scoliosis and MAGEC Growing Rods: Eli’s Story
A decade after Eli’s rare neuromuscular condition was first diagnosed at CHOP, he returned for successful surgical treatment during a global pandemic.
Gavin’s Story: Spine Surgery to Correct a Deformity Caused By a Rare Genetic Neuromuscular Disorder
When Gavin was born, doctors didn’t expect him to survive, but thanks to a large team of specialists and a coordinated spine surgery, he’s defying the odds.
Thoracic Insufficiency and Jeune Syndrome: Bubba’s Story
When Bubba was born with serious health issues, his family turned to CHOP for life-saving treatment from Jeune syndrome and thoracic insufficiency syndrome.
Sophia’s Story: MAGEC Growing Rod Implantation to Treat Neuromuscular Scoliosis
A CHOP occupational therapist's keen observation led to Sophia's neuromuscular scoliosis diagnosis, and supportive treatment to enhance her quality of life.
VEPTR Surgery for Spinal Muscular Atrophy: Raymond’s Story
Surgery in a child with spinal muscular atrophy (SMA) has eliminated life-threatening respiratory infections by straightening the spine and separating the ribs.
22q Deletion Syndrome: Amirah's Story
Saquon Barkley's shoes tell a story about his niece Amirah, who has a rare genetic condition and is being treated at Children's Hospital of Philadelphia.
VEPTR Surgery for Skeletal Dysplasia: Grace's Story
A lifesaving treatment at CHOP gave Grace a chance at life, and her family hope for a future with their daughter.
VEPTR Surgery for Jeune Syndrome: Madden's Story
Born with no hope for survival, a specialized team at CHOP helped Madden survive and thrive longer than anyone thought possible.
VEPTR Implants to Treat Jarcho-Levin Syndrome: Isla’s Story
After being told their daughter might not live past age 3, Isla’s parents were determined to look for a glimmer of hope, and they found it at CHOP.