The story of Jay
My name is Jay i and I am 30 year old individual diagnosed at birth with an invisible disability known as Congenital Central Hypoventilation Syndrome (CCHS). This disability is very rare and it involves a genetic mutation impacting our nevervous system. There are approximately 2000 cases of the diagnosis worldwide. Patients diagnosed require mechanical ventilation during sleep. However, some patients require mechanical ventilation 24/7. Each patient’s diagnosis is different. Some other symptoms of the diagnosis can include poor eyesight, poor temperature controls, and congnitive delays in young children. Most patients with CCHS can live full and healthy lives. They can achieve an education, build a successful career in the job market, and have families. Although there is no cure for CCHS and very little research is being done, CCHS Family Network and The CCHS Foundation are working together to continue raising funds and encourage friends/family to donate so the money can help go towards research and education.
Being diagnosed with CCHS has never stopped from achieving my goals and doing what makes me happy. I received an Associates of Science and Bachelors of Science degree in Business Administration. Currently, I work in the retail industry and am working full-time at one of the most well known retail stores Walmart. My work experiences include provide tutoring services for college students who have various disabilities as well as working part-time at small retail store with pharmaceutical services called CVS. Finally, I am an advocate and member of two well known disability organizations called The CCHS Foundation and Diversability Leadership Collective (DLC). Some of the work in my disability advocacy involve being panelist on the CCHS Board, being guest speaker on various disability podcasts, and getting involved in discussions surrounding disability and disability life.
While I am heavily involved in disability advocacy, I enjoy watching movie and television sagas such as Star Wars, James Bond 007, Fast & Furious, Mission Impossible, Marvel, MCU (Marvel Cinematic Universe), Spongebob Squarepants, The Simpsons, and DC Comics. During the summer, I enjoy visiting movie theaters and going to various museums. Finally, I love communicating with my CCHS Families on social media via Messenger and Whatsapp.
I am not afraid to share my story about disability and disability with those who are curious. I am proud to be part of organizations that understand disability life and treat you with respect, love, and heart.
This is…MY LIFE MY STORY MY RARE DISEASE!