Thoracic Insufficiency Syndrome Patient Stories
1 - 10 of 12
Severe Spine Curves and Related Complications: Vaia’s Story
When their foster daughter faced insurmountable odds, a Delaware couple turned to CHOP for help with complications from spinal muscular atrophy.
PICU Experience at the Middleman Family Pavilion: Louie’s Story
After a recent surgery to repair a fractured leg, Louie was transferred to the Middleman Family Pavilion in King of Prussia to recover, which is much closer to the family’s home.
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.
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.
Thoracic Insufficiency Syndrome and Spina Bifida: Landon’s Story
Landon's life has been transformed after his VEPTR surgery. His lung function has improved; he has enough energy to explore his surroundings,
Jeune Syndrome and VEPTR Surgery: Isla’s Story
James and Rachel traveled 3,000 miles to seek medical treatment for their daughter's TIS. CHOP is one of only a few hospitals in the nation that offer VEPTR surgery.
Thoracic Insufficiency Syndrome: Arwa's Story
Mubarak and Khairiah Alqahtani traveled from Saudi Arabia to seek lifesaving care at Children's Hospital of Philadelphia for their 18-year-old daughter, Arwa, who suffered from a rare disease.