“I’m currently 30 living in Lansing, MI. I work at an insurance company and am a computer support technician responsible for installation/maintenance/deployment of software as well as internal moves. I went to college with my service dog Noble from 2006 – 2011 and received my degree in Information Systems from Grand Valley State University. Here is where I met my wife & we got married last year and have been married for about a year & a half now. Some of my hobbies include video games, watching & playing sports (I’m in a bowling league in fall & softball league in spring/summer), messing around and building computers, skiing (water and downhill snow skiing), etc. Now that I’m married my wife really helps to make sure I never doze off without my ventilator, however when she’s not around I have a service dog who responds to my pulse oximeter alarm (this is how I achieved independence for college & lived on campus). I also remind myself to take walks frequently throughout the day if I don’t feel well, as then tend to help me feel better. My advice for those with CCHS is to not let this limit you from doing anything you want to accomplish. While you may have to work harder to get what you want, all good things worth having require work, so don’t let anyone tell you that you can’t do something.”
“My name is Anna. I am 20 years old and from Denmark. I was born in 1996, and I was diagnosed with CCHS at 11 months old. I spent a few weeks in the hospital, balancing between life and death, trying to figure out what was wrong with me. After being diagnosed with CCHS, my life has been going quite alright. I have been mask ventilated since birth, but I got the diagphragmatic pacer in 2014. I still sometimes use the mask.
My parents did a good job making my life as normal as possible, and not making CCHS my only identity. I did my last year of high school, at a boarding school, across the country, where I got to travel by myself 3 times! I later went onto college, and after finishing the 3 year program, I decided to move to Canada, which is where I am now pursuing my dream, of becoming a ski instructor.”
“Hey there! I’m Kyla Hosoda, I’m 26 years old, and I live in Las Vegas with my husband, two cats (Harley and Gatsby), and dog (Ella). I’ve lived on my own for 5 years, as well as nurse free. I’ve had either whoever I’ve dated, or roommates listen for my vent alarms at night, and if anything happened, they knew to wake me up. I just want to say that while growing up with CCHS has proven to be quite a chore, living with it and maintaining it is just second nature to me at this point. Honestly, aside from sleeping on a vent, my life is 100% normal. I do what I need to do in order to stay healthy, and beyond that, I live my life like anyone else my age. My husband and I are planning on having kids soon, and have decided to do IVF with genetic testing to ensure our child does not have CCHS. I’ve never thought of myself as different or special from anyone else (even though my mom insisted I was), I just knew there was one small part of me that slightly differed from everyone else. Independence is totally possible for us CCHS’ers!”
“My name is Jay Trivedi and I was diagnosed with CCHS at birth. Currently, I am 25 years old. I live in Shrewsbury, MA with my mom Charu and dad Mukesh. Ever since I was diagnosed, I have been able to do many things in my life. I have been able to attend high school and obtain college degree in Business Administration with a Finance concentration. Currently, I work at Walmart. My previous job was working with disabled students as a tutor in Microsoft Office and math. While I agree that we must think about CCHS, we must also think about how we can take our minds off from this rare syndrome. My favorite way to accomplish this goal is to get involved in some organization or go to the library.”
“Hi there I am Arianna. I live in a little countryside town near Venice, Italy. I am 25 years old, and was diagnosed with CCHS within the first days of life. My mutation is 20/25 and I sleep with a diaphragmatic pacemaker. I works as a secretary and adores watching Grey’s Anatomy. In my free time I love bathing in the swimming pool and reading books, expecially detective and love stories; among my favourite writers are Agatha Christie and Jamie Mcguire. I says that CCHS isn’t a curse at all, just a “strange” experience which lets me travel and meet other people.”
“Hi, I am Sarah and although I have CCHS, it is not who I am. I graduated from the University of California, San Diego in 2014 with a BA in Art History and Criticism. I am now in graduate school at the University of Pittsburgh studying Information and Library Science, Archival Studies. My dream job would be an archivist with the Smithsonian. Although I grew up in California, I love living on my own in Pittsburgh. I also love to travel, read, play the piano, sing, and ride horses. I have a wacky sense of humor that not everyone always gets. My family call me “Sarahpedia” – because I can remember most anything I read.”
“My name is Nico Meyering. I earned a MPA at Binghamton University and have worked in the public sector in New York, California, and Texas. An ordained minister, lifelong member of Phi Alpha Theta and inductee into Sigma Alpha Lambda, I currently handles aspects of social media and fundraising for the CCHS Network. Originally from New York, I have lived, independently, on both coasts and in Texas. While in Texas, I hosted bimonthly video game marathons to raise money for CCHS advocacy and research. Currently I live in Albany and work for the state of New York.”