9 minute read
ONE TOUGH MOTHER
{ SHIFT+CONTROL }{ SHE HUSTLES TALKS }{ SHE HUSTLES TALKS }{ ONE TOUGH MOTHER } ONE STRONG PAGEANT QUEEN
BY CHRISTINE PIACENTINO I PHOTOS BY DOUG MITCHELL &
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You may think what does One Tough Mother have in common with a beautiful, statuesque pageant queen? I met Jessica Fabus Cheng while lobbying congress for the Muscular Dystrophy Care Act. (MD Care Act) I remember walking across Capitol Hill with Jessica. She stopped and pulled something out of her bag. She handed me her camera and asked me to take a picture. Jessica, the true pageant queen struck a pose, holding her Mrs. Metropolitan sash. It was the local title she had while competing in the Mrs. New York America pageant. Watching the staffers and congressional representatives pose with a pageant queen was an enlightening experience. Their faces just lit up. Jessica knew before I did that this was a unique way of raising awareness for Duchenne MD. We have been close friends ever since.
In July 2021, I received a phone call from Jessica asking if I would attend the Mrs. New York America pageant and cheer her on. I was the only one in the audience cheering for her I was delighted when she won the Mrs. New York America title. She would compete for the national title of Mrs. America 2021. I flew to Las Vegas in November 2021 to watch her compete. She was phenomenal, but I could tell something wasn’t quite right as Jessica didn’t have the sparkle and shine, she usually did. I was worried but didn’t want to cause additional stress during her competition. It wasn’t until after the pageant that I discovered she was battling a severe health problem. This month had the pleasure to interview Jessica to discuss her love for pageantry and her future plans.
What made you decide to get into competing in Pageants?
I originally wanted to do pageants as a child. My mom was decidedly against
it, but I felt a deep connection to it from the start. I participated in my first and only pageant as a kid in 1995, after babysitting for nearly a year and raising my own money. That experience taught me so much about the depth of my own convictions and holding fast to my dreams. During that time, people came out of the woodwork to help me, and it made me realize that when people see your passion and mission, they are often willing to assist. I continue in pageantry to this day to advocate for and bring more awareness to a disorder called Duchenne muscular dystrophy.
What effect did you think pageantry would have on your advocacy work for Duchenne Muscular Dystrophy?
One of the biggest advantages of being a titleholder while doing advocacy work is the memorability factor. Even with a local title, wearing a sash in a congressional meeting is pretty uncommon. Duchenne muscular dystrophy is under the umbrella of a rare disease, although it is the most common form of muscular dystrophy diagnosed in childhood across all races and ethnicities. I wanted our lawmakers to not only remember the stories behind this disorder but to realize that this is not just some obscure cause that very few know about. Standing up and speaking up through advocacy for Duchenne carries so much importance for the families it directly impacts. I wanted our congresspeople to understand that the families and individuals affected by Duchenne are worth fighting for, and with something unique like a pageant sash or crown, the mission is memorable and stands out in a special way. Many congress members and their staff often remember me because I wore my sash in advocacy meetings.
Can you tell us, what Duchenne Muscular Dystrophy is?
Why did you choose it as your platform? Duchenne muscular dystrophy is an X-linked genetic disorder, hallmarked by progressive muscle loss and weakness. Over time, Duchenne affects the body systemically, ultimately leading to the deterioration of the skeletal, cardiac and pulmonary (lung) muscles. Life expectancy is increasing as our treatment modalities are getting better, especially in the last 10 or so years, but it still is only around the age of 30. Affecting about 1 in 5000 (or 1 in 3600 in some estimates) live male births, the genetic condition is commonly passed down from the mother. These women are called “carriers” and I am one of them. I have a close family member who was diagnosed with Duchenne in the early 2000s, which lead to the women on my mother’s side of the family getting tested for carrier status.
I chose Duchenne as my platform because it affected not only my entire family but my relationship with my future husband (at the time) and our plans for having a family. Carriers like me have a 50% chance of passing Duchenne on to a child, for example. As time has gone on, my connection to this platform continues to grow and deepen. The years spent advocating and helping encourage others in the Duchenne community to lift their voices have allowed me to meet and connect with so many incredible souls not only throughout the state of New York but around the United States and the world. I’ve connected with people in Africa, the Dominican Republic, and Australia, for example. This is because Duchenne touches every country on the globe and is not unique to a specific group of people. It reminds me that although I am only one person, there is a vibrant tapestry of support and community that exists, with many focused-on change and healing.
Duchenne is a complex rare disease. What are some of the key things that you would want to tell someone that isn’t familiar with the disease?
One of the most basic is that people with Duchenne are not defined by their condition. People with Duchenne are graphic designers, engineers, authors, advocates, musicians, poets, biologists, artists, and the list goes on. This doesn’t directly have to do with the pathology of this disorder per se but in my humble opinion, it is really key that we see people as fellow human beings and respect them as such. This is why my platform is what it is – “The Power of Your Story” – it is the sharing of human experiences that connects us powerfully to each other. Years ago when I first shared my own personal struggles as a carrier of Duchenne publicly, a few individuals thought the information was “too personal.” But that resistance was short-lived because the impact of my vulnerability on the community far outweighed any opinion of me. I believe in an “I go first” mentality when it comes to sharing stories because it opens up the possibility for someone in a similar situation to be strengthened or encouraged by it. Even if they don’t choose to share any of their story publicly, the fact remains that someone verbalized something similar to their experience. So in that sense, Duchenne is complex not only in the medical and physiological sense but in the mental and emotional areas as well.
World Duchenne Awareness day is September 7, what do you plan on doing to support it?
Well, the entire month of September will be a special month, as it’s Duchenne Awareness Month, or “Duchenne Action Month” as I prefer! I plan on highlighting Duchenne and Duchenne advocacy on my social media accounts, talking to families in the Duchenne community and attending events - notably by Canine Companions for Independence, Parent Project Muscular Dystrophy, Kindness Over Muscular Dystrophy, and the Coach to Cure MD Tackle Duchenne homecoming game at Utica University near Syracuse, NY with some friends in the community!
You recently crowned your successor, what will do next?
I know you as a fierce Duchenne MD advocate on the hill, will you continue to raise awareness for Duchenne? Absolutely. The promise I made to myself when creating my platform was that it had to be something I would continue doing and growing in when I was done competing in pageants. Being a pageant titleholder has only fueled my fire to continue serving others and championing families in the Duchenne community. I think it’s important what you do after the pageant just as much as before and during. You are creating a legacy for yourself, and continuing to pursue excellence after a year of service ultimately makes the world a better place.
America Pageant in Vegas, can you tell us about that, and how you are doing now? Two weeks after being crowned Mrs. New York America I discovered a mass on my neck. Instead of solely focusing my time on preparing for a National pageant and serving as a state titleholder, my time immediately was divided between titleholder duties and doctors’ appointments.
I was scared, especially because even after a biopsy of my neck the results were returned inconclusive. I have a young family which added a layer of sadness in the beginning. As time went on and as a medical professional myself, I knew I was facing surgery, yet how imminent that would be determined if I was able to compete at Mrs. America or even finish my year as a titleholder. In January of 2022 and after the pageant, I was diagnosed with a rare form of thyroid cancer known as Hurthle cell carcinoma, occurring in less than 1% of all thyroid cancers diagnosed. I underwent another surgery in April and I recently completed a round of radiation therapy and had a couple of full body scans to check for metastasis. As of now, it looks like the scan is negative for cancer spread, and I am incredibly humbled and grateful for that, given that my tumor had a few aggressive qualities. I thank God. The takeaway for me over this past year was learning
to give myself grace under pressure. As I have matured, I have learned to value quietness and trust greatly. Throughout my year of service, I found it important to continue to advocate for Duchenne and be present in the community despite my health struggle. I am grateful for the journey I am on and will continue to hold to my faith and go wherever God leads.
To learn more about the organizations that Jessica is supporting visit:
https://www. worldduchenneday.org https://www. parentprojectmd.org https://canine.org https://www. kindnessovermd.org
