Nonprofit's dresses help girls undergoing chemo feel 'like a princess'

Harper Wengrod sat in a toddler-sized chair in her Merrick living room clutching a black package covered in gold hearts and white unicorns and warned her older sisters to stay away.

"It’s not your present. It’s my present," the 2-year-old declared.

Then she yanked out the gift — a unicorn-themed, rainbow-colored tutu dress with a customized zipper that runs down the chest. The placement of the opening allows Harper, who is undergoing treatment for ovarian cancer, to wear the dress during chemotherapy. It also came with a headband with colorful streaming extensions to adorn her bald head.

"No way!" a gleeful Harper yelled before pulling it on and modeling for sisters Avery, 5, and Samantha, 7.

The dress, provided by the Hauppauge-based nonprofit Whip Pediatric Cancer, is called a Uni-port. "Uni" for unicorn and "port" for the medical device implanted in many pediatric cancer patients’ chests through which nurses take blood samples or administer chemotherapy drugs.

Since launching the initiative this spring, Whip Pediatric Cancer has sent more than 115 handcrafted dresses free of charge to girls across the country, said Jordan Belous, 27, of Melville, the nonprofit's founder. The organization, funded through individual and corporate donations, raises money and awareness to help families facing pediatric cancer.

When Belous first offered the outfits on her Whip Pediatric Cancer Facebook page on Memorial Day weekend, 70 families from as far away as England and Australia requested them within 10 hours. "We had to shut the form off, we had so many responses," Belous said.

LESS VULNERABLE, MORE DIGNITY

Many children undergoing cancer treatment have the quarter-sized medical device implanted under the skin, allowing nurses to easily access a main artery. It stays there for the duration of what can be years of treatment, said Lauren Sharaby, a certified child-life specialist at Stony Brook University Hospital’s pediatric hematology and oncology department.

"The Uni-port dresses make these kids less vulnerable because the nurses can get to where they need to go without them taking their clothes off," she said. "Kids that age love to dress up. So, they can still be kids and get treatment at the same time."

Selena Flores, 3, of Farmingdale, who is undergoing treatment for leukemia, is another Uni-port recipient. "When we first got it, Selena wouldn’t take it off, and every day she asks to put the dress on," Flores’ mother, Lisa, 34, said. "She loves it because she feels like a princess." 

Belous did not invent adaptive port dresses. She simply wanted to make them beautiful. Other options look like pajamas or nightgowns, Belous said. She scoured the internet looking for dresses that were frilly and fancy that she could modify herself. She found a company based in China. "They’re probably thinking, ‘Who is ordering all our dresses?’ ” Belous joked.

She sat up nights after work for weeks in her apartment measuring and cutting zipper tape to prepare the zippers to be sewn in. "My hands were literally cramped and swollen," Belous said. Each zipper has a gold heart — the logo of Whip Pediatric Cancer — as its zipper pull.

THE ZIPPER FAIRY

The dresses are delivered to seamstress Brittany Meehan in Lantana, Florida — whom Belous affectionally calls the "zipper fairy" — and she sews each zipper into place.

"Jordan found me on Facebook," said Meehan, 39. "I didn’t even hear the whole story before I said, ‘Sign me up. I want to be involved.’ We’ve just been pumping them out. I have four children myself. They are healthy, and it breaks my heart to see parents and children go through something like this."

Parents often ask Belous, "What are you going to do for the boys?" But she said she focuses on girls because it’s not unusual for a boy to take his shirt off. "Think of a 9- or 10-year-old girl who doesn’t want to undress for a doctor’s appointment," she said. "It gives them that dignity, and I think that’s really important and powerful too."

She’s got the next 100 zippers and fabric prepped to create more dresses, and she said she is trying to figure out a way that the garments can be mass produced instead of crafted by hand. Belous has been asking for $25 donations to sponsor a dress and is seeking corporate sponsors.

‘EASIER, HAPPIER, BETTER’

Belous created Whip Pediatric Cancer at 16 while working as a counselor at Sunrise Day Camp in Wheatley Heights, a camp for children with cancer and their siblings.

She launched an online campaign in August 2015 challenging people to dance to song "Watch Me (Whip/Nae Nae)" by Silentó that raised tens of thousands of dollars for pediatric cancer research.

While still in high school, Belous followed up by creating the Heart of Gold campaign. Schools across the country asked students to donate $2 each for a gold heart that they put their names on and hung on the school hallways during September, Pediatric Cancer Awareness Month. The Heart of Gold campaign still operates annually and launched this month. 

Stony Brook’s Sharaby called Jordan amazing. "She really gives her all to the patients and their families," she said.

In March, Whip Pediatric Cancer hosted a Hockey for Harper tournament that raised $42,000 for the Wengrod family’s cancer-related costs. Belous, who goes by JJ, also often visits the children in the hospital during treatment.

"I think a lot of people look away. It’s hard to see kids without their hair," said Harper’s mother, Melanie Wengrod. But Belous doesn't.

"She eats, sleeps and breathes all of us," Wengrod said. "She asks, ‘How can I make it easier, happier, better?’ ”

Belous became interested in helping pediatric cancer patients after her mother, Victoria, was diagnosed with Ewing sarcoma, a cancer typically found in children, when Belous was 2. Because her mother had a childhood cancer she was treated in the pediatric cancer unit, and Jordan would see sick children there. Victoria and Belous’ father, Seth, have helped her with foundation needs over the years. Victoria accompanies Belous on visits and Seth offers the headquarters of his Hauppauge IT company, Flexible IT, for events.

Belous continued her Whip Pediatric Cancer work while attending college in Tampa, and now works remotely in marketing for a medical sales company, allowing her to split her time between an apartment in West Palm Beach and her childhood home in Melville. She hopes to make the nonprofit her full-time job at some point if funding allows.

WELCOME HOME, GOLDIE

This summer, in addition to giving Selena a Uni-port dress, Belous also helped the Flores family get a dog. The idea came to Belous after she saw how joyful Selena was when Belous brought her cavapoo, Piper, to her house.

"We were looking at cavapoos before Selena got sick," said Selena’s mother, Lisa. When Belous found that out, she sprang into action, contacting the breeder she’d gotten Piper from to see if she would donate a dog to Selena and her two older brothers. "Usually when I have a crazy idea, I figure out how to make it come to life. That’s just my personality," Belous said. "I just thought it would lift everyone’s spirits."

Her breeder was willing, and Belous posted on Whip Pediatric Cancer asking if anyone had airline connections to fly the breeder and dog from Salt Lake City to MacArthur Airport in Islip. Johnny McKay, a flight attendant for Southwest Airlines, had met Belous years earlier at CureFest, an annual childhood cancer gathering in Washington, D.C., and saw her plea.

"This was something I wasn’t afraid to go to the top with," McKay said. He took the request to Southwest CEO Bob Jordan’s office. Southwest secured tickets for the breeder and dog in July, McKay said. Southwest also sent a social media team to film the story of Whip Pediatric Cancer’s delivery of Goldie, named for the color gold, which represents pediatric cancer awareness. 

BORN TO DO THIS

Belous said her work with Whip Pediatric Cancer is often fun but can bring heartbreak when a young child succumbs to the disease.

In March of last yearshe thought she was going to quit, she said. She had been visiting a girl named Aubrey in Florida since the girl was 7; Aubrey died at age 10.

"I laid in the hospital bed with her," Belous said. "I was devastated. I thought, ‘This is my goodbye to the nonprofit. I’m done.’ ”

She sought therapy, and the therapist told her that if this was her calling, she would get back to it when she was ready.

Three months later, Belous resumed the operation.

"This is what I was born to do," she said. "It’s really hard. ... But then things like this come up," she said, referring to the Uni-port dresses, "and I’m happy to be continuing the mission and so glad so many kids are smiling."

To sponsor a Uni-port dress with a $25 donation, visit whippediatriccancer.org/uni-port-program-donate-page/.