You know, Mom, this is sometimes just an inconvenient disease to have," my 10-year-old niece Grace Rose says of her cystic fibrosis. She's a girl with talent and life experience beyond her years — so much so that my family jokes she is 10 going on 30.
Grace Rose has outlived the life expectancy predictions doctors made when she was born. She has lived in two cities, starred in countless theatrical productions, excelled in fifth grade, danced in a professional troupe for the E League, a Los Angeles-based celebrity basketball league, and rubbed elbows with Zac Efron, Josh Hutcherson and Olivia Holt. Now, with her new fashion line Rosie G, she's adding "clothing designer" to her list of accomplishments.
On the morning of Nov. 27, 2002, my pregnant sister Leah (Grace Rose's mother) had her 36-week checkup. The baby, in utero, was on the monitor — heart beating, legs moving — when a neonatal specialist noticed something abnormal.
"This isn't right," he said. "Her abdomen is distended. We need to get this baby out immediately."
Grace Rose was born that day at 3:30 p.m. and was rushed to Children's Hospital for emergency surgery to remove the meconium ileus blockage in her large intestine. Grace Rose and Leah came through their surgeries with only my mother nearby, because at the time my family was spread across the globe. My brother lived in Germany, my oldest sister lived in Los Angeles, I was spending a semester abroad in London and my paternal grandmother was in Boston battling advanced breast cancer with my father by her side. Always one to play by her own rules, my mom sneaked Leah out of Touro Infirmary so she could be with her newborn daughter at Children's Hospital. Grace Rose was in the neonatal intensive care unit for a month before she came home.
Our family learned Grace Rose's cystic fibrosis (CF) is a genetic disease that attacks the respiratory and digestive systems. Grace Rose doesn't produce the enzymes that break down mucus and absorb nutrients from food. She and other CF patients are prone to lung infections and can get blockages in their intestines. There is no cure for cystic fibrosis.
"I take over 30 pills throughout the day and have to do two breathing treatments in the morning and evening," Grace Rose says. "It eats up a lot of time." To say that Grace Rose is a warrior would be an understatement. She is one of the strongest people I know. Very early on, she made a decision that CF would not define her. She believes a cure will be found, and she wants to be responsible for finding it.
How does a 10-year-old work toward curing a terminal illness? Every year Leah and I host the GR4CF (Grace Rose for Cystic Fibrosis) fundraiser in New Orleans.
"My fundraiser has always been about fashion, because my mom's a designer, and it's a way I love to explore my creative side," Grace Rose says. This year, Grace Rose unveiled samples of her very first full collection. Her line, Rosie G (www.rosiegstyle.com), debuted as a 25-piece assemblage of her personality in clothing form: bright, colorful and easygoing.
"I was inspired by the two places I call home: the beaches in Los Angeles and the bayou in New Orleans," Grace Rose says. "It's beach meets bayou."
This idea spawned drawings and designs that we took to a seamstress, who brought the samples to life. The dresses consist of two panels — one panel over each shoulder. Each is a different pattern in a complementary color. The Rosie G collection allows the wearer to mix, match and choose her own unique look.
"I really like easy, soft and comfortable fabric," Grace Rose says. "I hate labels — they itch — so each label is a heat-sealed iron-on."
Grace Rose also designed maxi skirts, tops, palazzo pants and dance pants that set the collection apart from most children's lines. A percentage of sales benefits the Cystic Fibrosis Foundation on Grace Rose's behalf to help find a cure for CF. The first Rosie G collection will be available at Pippen Lane in spring 2014.
Grace Rose and Leah have launched a crowd-funded campaign to raise money to produce Rosie G's first full collection. This project has given our family the next chapter to anticipate. It's rare for a child to understand the concept of giving back to move forward, but fortunately, Grace Rose knows it's just as important to create a future for herself as it is to help others suffering from CF. Grace Rose's collection, Rosie G, is her first step toward finding a cure ... with style.
For more information about Rosie G, visit www.facebook.com/rosiegstyle.