This site is in honor of my love, Landon, whom has had his own battles with CCHS, Hirshsprungs, & Epilepsy.... and continues to do so on a daily basis! After 6 months in ICU after birth and spending most of his life returning to ICU, he has thrived and grown into a handsome little man I am unbelievably proud of. Having 14 major surgeries to-date, he continues to bounce back, recover, and move on to bigger & better! He lives his life like any other 6 year old little boy and lets nothing stand in his way! I could not be more proud than to call him my own! We hope this site carries you through his journey with us, and holds the many valuable resources we learned along the way, and puts them all in one place for your conveinience.
Thanks for visiting our site!
This is our sweet little Zoe she has CCHS and a 20/26 repeat mutation of the PHOX2B gene. Zoe has undergone a lot in her little life 10 different surgeries since birth. She was 24 hour dependent on her ventilator until she was 2 years old until we were able to teach her to breathe of her ventilator for 12 hours. Now Zoe is 11 years old she is still 12 hour dependent on her ventilator, however instead of the standard ventilator Zoe uses breathing pacers that have been built into her chest wall and had her trach removed. Zoe goes to a mainstream private school and is in the national Piano Guilds well. Zoe has never allowed CCHS to define who she is, Zoe like all CCHS kids do not have an ounce of quit in them.
Noah is almost 3 years old. He was born with Congenital Central Hypoventilaton Syndrome (CCHS). He spent the first 4 months of life in the hospital after receiving a trach and a ventilator. Noah does not let CCHS rule his life. He loves swimming, playing outside on his swing, singing, reading books, and playing with his much adored older sisters. He LOVES fire trucks, buses, Sesame Street and Bubble Guppies. We have learned so much from him. He has taught us to never take things for granted and to enjoy life to its fullest every day. He is our blessing and our hero.