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 was implanted at Boston Children’s Hospital by Dr. Modi in 2016 and was decannulated only one year later.
Today, Yonathan is comfortable going out and is living his best life. He is a children’s camp counselor, loves watching movies and enjoys High Intensity Interval Training for exercise. He is now a high school senior and is thinking about what his next steps will be.
Yonathan says, “I definitely have more freedom now than I did when I had the trach. It’s a lot easier, and I don’t have to get suctioned. I haven’t had a nurse for about 4-5 years now.”
Source: ABD-PP-044, Rev A 09/2021
