When Sleeping Is Deadly - CCHS

Meet the beautiful family of Eloise, Ash, Harrison and Beauden. Filmed in July 2024 and shown at The Arundel Film Festival. Beau Kent. Congenital Central Hypoventilation Syndrome (CCHS)., Learn about how Keep Me Breathing are working to develop a treatment for patients with CCHS, an ultra rare genetic disease.

[@Bradimus1]

My son has this as well. Born in 2017, has a trach. US - Minnesota. Nursing coverage is definitely the biggest never ending stress. There are pacers now to directly stimulate the diaphragm. I'm assuming the technology you're supporting is intended to do more, like monitor 02 simultaneously to help tye device decide on various parameters.

[@KelliCoggins-ng2cn]

My grandson has this as well. He is blessed that he only has to use a bi-pap.