Updated: Sep 28
by Kristen Kucharski
MEET EMILY ROMINSKI OF WHEATON
On Friday, August 14 the community of Wheaton came together to give Emily Rominski a very special surprise parade to celebrate her 13th birthday.
At this young age, Franklin Middle School student Emily Rominski has a fatty liver, high triglycerides, kidney disease, cardiac issues, anemia, insulin resistance, reduced range of motion, thinning skin and hair, and a short stature. Emily was diagnosed with Atypical Progeria Lipodystrophy at the age of two and is the youngest patient to test a trial drug known as Myalept. Emily has no adipose tissue, a mutation on her LMNA gene, and her body is aging more rapidly than her peers.
“Emily is so much more than her appearance and her health concerns,” mom Kristina shares. “If only our eyes saw souls instead of bodies, how different would our ideals of beauty be.”
People who interact with Emily on a daily basis never know that she has any pain, because Emily doesn’t complain – she is very determined and does not want special accommodations – she does not let Atypical Progeria Lipodystrophy and any related struggles define her. She is resilient and brave and a hard worker. She is determined to live life to the fullest; hence why Wheaton residents, Theresa Ferguson, Jaymie Edwards, and Krista Scheidt wanted to do something very special for her birthday since the pandemic has isolated her from her vibrant social life.
“The tougher days seem a little more often right now, probably because some of us are able to go out to the store or work and interact with people and Emily is still ‘stuck’ at home,” Kristina shares. “Emily has a relationship with Jesus as her Lord and Savior, so that is first and foremost her way to deal with bad days, but of course, still misses her friends and school.”
Applying Emily’s philosophy that “Hope shines brightest in the darkest moments”, well-wishers worked together to coordinate a surprise ice cream party for Emily at the Scheidt’s Wheaton home, while community members lined up at First Presbyterian Church of Wheaton, along with the Wheaton Police and Fire Department, as well as the Mayor of Wheaton. In addition to the parade, gifts and cards were mailed and delivered to Krista's husband, John Scheidt, at his office at ZRG Partners in Wheaton, who presented Emily with a cash gift from a GoFundMe account that was created in response to people wanting to contribute to her birthday.
Emily’s positivity touched a community, and in response, the community became “the rainbow in someone else’s cloud”.
-Kristen Kucharski, Photos by Mike Catuara