BEHIND THE CROWN

{ COACHING WITH KRISTIN{ BEHIND THE CROWN } } MEET JESSICA FABUS CHENG

BY JESSICA FABUS CHENG

Jessica Fabus Cheng was recently crowned Mrs. New York America 2021. The 44th annual competition leading to the prestigious Mrs. America pageant was held at the RIT Inn and Conference Center in Henrietta, NY on July 18. Jessica held the local title of Mrs. Metropolitan for 5 years on her journey to becoming the state titleholder. time leads to their deterioration. Life expectancy for a person with Duchenne is between 16 and 26, yet with technological advancements, cutting edge treatments and advocacy this number thankfully is on the rise.

Shortly after her cousin’s diagnosis, the family learned that Duchenne muscular results, she was followed by multiple medical students and residents and my heart sank a little, because I knew they were not there to learn how to give good news,” Jessica says.

“Every time that I didn’t win the crown, I decided that I was going to go back and give it my all, whatever it takes,” she said onstage as part of her final answer.

Her staying power and dedication comes from her experience as a Nationallevel Taekwondo athlete, a Registered Nurse and her work as an advocate for the research and funding needed to end a fatal genetic disorder called Duchenne muscular dystrophy, a diagnosis her cousin received in 2003.

“I will never forget the phone we received telling us that my cousin had been diagnosed with Duchenne at the age of 4,” she recounts. “It was like the rug had been pulled out from underneath us.”

Duchenne muscular dystrophy is the most common form of muscular dystrophy diagnosed in childhood and is characterized by progressive muscle loss and weakness, affecting the skeletal, heart and breathing muscles which over dystrophy was commonly passed through the mother’s line of the family. Women who passed the disorder on or those that had the potential to do so were called genetic carriers.

“I remember having to go to the University of Chicago to determine if I was a carrier in my early twenties. When the doctor came in to give my Although being a carrier is not a fatal diagnosis, there are health implications for some women, such as an enlarged heart, fatigue and sometimes even manifesting the characteristics of Duchenne. The biggest effect tends to be in the realm of family planning, as being a carrier means there is a 50% likelihood of the disorder being passed on to a future child.

“This diagnosis affected every area of my life and I actually felt a lot of shame about it for a long time,” Jessica recalls. “I knew I eventually wanted a child, but how do you start that conversation? It’s not exactly something you want to bring up on a first date.”

Despite the fears, Jessica met her husband Dan in 2012. “Funny story, I was 2 hours late to our first date,” she remembers. “I made the strange decision to drive into Manhattan from Brooklyn on a Saturday night which, needless to say, is a big mistake.”

Faux pas aside, the couple began to get more serious the following year.

“I knew I had to tell Dan about my carrier status. I knew that if we got married, he also wanted children, so I

“I decided to begin advocating several years ago because the whole idea spoke to me. I also made the connection between holding a local pageant title and using it to serve my community.”

I had to face my fears and tell him about my situation. He ultimately told me he loved me and wanted to be with me regardless, which was so special.”

The couple married in 2016, and in 2019 decided to plan for a baby. They welcomed baby Coco in May of 2020.

“The first step for us was preconception genetic counseling and testing. I was a known carrier for Duchenne but testing for other genetic disorders that we could be a match for was important to us as well.”

One of Jessica’s objectives as Mrs. New York America, in addition to working closely with the Duchenne community, is promoting the importance of making informed choices relating to a women’s reproductive health, and reproductive health in general.

“As a nurse I know that there is a huge spectrum of beliefs and thoughts on this topic, and all are valid. My goal is not to tell you what is right and wrong, but simply to provide information. My husband and I ultimately decided to pursue IVF (in-vitro fertilization) and genetic testing to end this form of muscular dystrophy in our family. This is highly personal to disclose, but in order for me to relate and connect to others in a similar situation it is empowering and necessary.” advocates with the patient advocacy group Parent Project Muscular Dystrophy (PPMD) as an Advocacy Captain for the state of New York.

“I decided to begin advocating several years ago because the whole idea spoke to me. I also made the connection between holding a local pageant title

and using it to serve my community. My experience advocating for patients at different times in my nursing career combined with the fearless mental strength martial arts teaches made me the perfect candidate. I’ve worked in the operating room for basically my entire career, and I also figured if I could stay cool and communicate with surgeons in high pressure situations, I could easily handle Washington, D.C.”

Each year in March Jessica leads a delegation of advocates from around New York state down to Washington, D.C. to speak directly with lawmakers in the House and Senate.

It’s really critical that our elected officials get the opportunity to hear directly from families impacted by Duchenne. My platform, “The Power of Your Story,” is just that: our real experiences connect with congress on the human level, across the aisle, in a completely bipartisan way. My heart is for the first-time advocates and people who think they don’t have the strength to speak up. The reality is sharing your personal experiences can make a huge impact on securing the funding needed to end Duchenne muscular dystrophy. And if I’ve helped a family or individual to at least contemplate doing something they never thought they could EVER do, then I’ve don’t my job.”

Jessica competes for the title of a lifetime: Mrs. America on November 20, 2021 in Las Vegas, Nevada.

For more information please visit: www. mrsnyamerica.com