Success Stories
ROHHADS and CCHS Patient Pacing for over 10 Years
Josh's school photo Josh’s mother noticed that he was struggling to stay awake. After suffering full respiratory arrest, numerous tests were performed to [...]
Emily – Congenital Central Hypoventilation Syndrome
Emily is ventilator-free, allowing her to enjoy horseback riding Emily has been using the Avery Diaphragm Pacemaker since she was three years [...]
Skiing with the Avery Diaphragm Pacemaker
Shortly after birth, Evan was diagnosed with CCHS. He was given a tracheostomy and ventilated at 5 weeks old, and at age 4 he had [...]
Avery’s Ballerina
Elise has Congenital Central Hypoventilation Syndrome (CCHS). Because Elise would get at least two infections a year, her doctor recommended the Avery Diaphragm Pacemaker. In [...]
Marliné Competes in Show Jumping
Marliné competing in show jumping Marliné was born prematurely in South Africa in 2011. She was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS). [...]
Shannon & Lauren
Lauren and Shannon with their children Shannon and Lauren are 33-year-old identical twins living with CCHS. From birth to age 8, ventilation [...]
Leo Travels the World
Leo and his father on an adventure Leo was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS). In 2015, at age 5, he was [...]
Polina Now Living at Home Vent-Free
Polina was born with CCHS in 2006. She spent the first four years of her life in a hospital on mechanical ventilation before she was [...]
Being Able to Hike with The Avery Diaphragm Pacemaker
Allie was born with the rare condition of Congenital Central Hypoventilation Syndrome (CCHS). Due to CCHS she requires 24/7 mechanical ventilation. At 10 years old, [...]
International CCHS Conference 2018
5th International CCHS Conference: The Future is NOW Priorities, Partnerships, and Patient Voice When: June 20-23, 2018 Where: Chase Park Plaza, St. [...]
