Yonathan, Pacing Since 2016
Yonathan was born in 2004 and diagnosed with CCHS (Congenital Central Hypoventilation Syndrome) by two months old. Although his parents learned about the Avery Diaphragm Pacemaker at that time, it wasn’t until he was 13, after his bar mitzvah, that he decided he wanted to be more independent and be implanted with the pacer. He […]
Cash, Pacing Since 2013
Cash was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS) and was given a tracheostomy as an infant. He spent the first few years of his life in and out of the hospital, battling many ventilator-associated infections. At five years old, Cash was cervically implanted with the Avery Diaphragm Pacemaker at Phoenix Children’s Hospital, and he […]
Emily, Pacing Since 2001
Emily has been using the Avery Diaphragm Pacemaker since she was three years old. She was born with CCHS, a disorder that affects breathing, causing shallow breaths (hypoventilation), especially during sleep. Before she had the Avery Pacemaker implanted, Emily had to have a mechanical ventilator with her at all times. The ventilator made it difficult […]
Josh, Pacing Since 2009
Josh’s mother noticed that he was struggling to stay awake. After suffering full respiratory arrest, numerous tests were performed to identify the cause, finally resulting in a diagnosis of ROHHAD (Rapid-Onset Obesity with Hypothalamic Dysfunction). Three days before his 9th birthday, Josh had a surgery to insert a tracheostomy tube, so he could connect to […]
Evan, Pacing Since 2010
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 the Avery system implanted. At age 7, Evan was finally decannulated and he and his family have not looked back! Evan’s mother says “12 years ago, we never in a […]
Anna, Pacing Since 2014
Anna was born in Denmark in 1996 and was diagnosed with CCHS at 11 months old. This meant that she had to use a VPAP bi-level machine as her primary means of ventilation, until she was implanted with the Avery Diaphragm Pacing System in 2014. Anna is currently in college studying business and plans on […]
Elisa, Pacing Since 2012
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 November 2012, Elise was implanted at the Tulane University Hospital by Dr. Steiner. Six weeks after being implanted, Elise was pacing nine hours a night. Elise was also able to […]
Marliné, Pacing Since 2012
Marliné was born prematurely in South Africa in 2011. She was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS). Searching for an alternative to mechanical ventilation, her mother, Annalize, was referred to Dr. Martin Bruwer, a Cardiothoracic Surgeon in South Africa. Dr. Bruwer implanted Marliné with the Avery Diaphragm Pacing System in 2012. When interviewed, Annalize […]
Shannon & Lauren, Pacing Since 2003
Shannon and Lauren are 33-year-old identical twins living with CCHS. From birth to age 8, ventilation was provided via tracheostomy and then BiPap was used from age 8 to 16. In 2003, Shannon and Lauren received the Avery Diaphragm Pacemaker at London Health Science Centre in London, Ontario, Canada. The surgery was a success and […]
Leo, Pacing Since 2015
Leo was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS). In 2015, at age 5, he was implanted with the Avery Diaphragm Pacing system. Prior to implantation, Leo’s activities were limited. With the Avery System, he can comfortably and securely travel with his family. He just recently returned from a trip to Vietnam and Thailand! When […]
