Rylie's Smile fundraiser at Nicola Pizza March 7
Not even two years have passed since Rehoboth's 9-year-old Rylie Maedler narrowly escaped a diagnosis of cancer, and she's set out to help other children who weren't so lucky.
This weekend, the Rehoboth Elementary School student plans to hold a fundraising kickoff party for her new foundation, Rylie's Smile, which she organized to provide iPods to children battling life-threatening illnesses.
After Rylie developed an aggressive tumor in 2013, it was almost misdiagnosed as cancer. She was preparing to begin chemotherapy before doctors had second thoughts and called for more testing, which was when they discovered she had actually developed a tumor - an aggressive giant cell granuloma - that mimicked cancer, but was not malignant.
Barely a year after her last surgery to remove the tumor, Rylie has a clean bill of health and in February the Rylie's Smile Foundation was legally created to help children and families cope with a diagnosis they can't escape.
Despite her age, the young philanthropist said she's determined to bring comfort and make the long, boring and sometimes sad experience of battling a scary disease a little better for other kids.
"I think people are surprised it's me doing this," Rylie said. "Because I'm only 9 years old."
As the first major fundraising event for Rylie's Smile, her mother, Janie Maedler, said they will be hosting a kickoff party this Saturday, March 7, from 5 to 9 p.m. at both Nicola Pizza locations in Rehoboth Beach.
As old family friends, the Caggiano family, owners of Nicola, have been incredibly supportive of Rylie throughout the entire ordeal, her mother said, and they have offered to donate 15 percent of the proceeds from food and alcohol sales during the kickoff party.
With a 50/50 raffle, silent auction, a volunteer performance by the Back Bay Strummers and a portion of the proceeds from sales, Janie said the event should bolster the foundation with startup funds so they can begin working on the actual mission, providing iPod touch devices to children battling life-threatening illnesses.
The speedy formation of her foundation was made possible after a local lawyer and accountant, Alison Houck, generously donated services, Janie said, but the decision to gift young patients with this particular device was made only after much deliberation, she said.
During the time when Rylie was in and out of the hospital, and undergoing inconclusive testing, her mother said it became nearly impossible to offer her daughter solace until medical professionals procured an iPad that was property of the hospital.
The iPad helped, she said, and Rylie's grandmother went on to buy an iPod for the young patient, which made all the difference on many sad and scary days.
"Whenever she would have a device with her, she would just relax," Janie said. "The nurses say 'Those things are like Xanax.'"
But most hospitals don't typically provide these electronic devices to patients, she said, and they realized many of the other patients didn't have a grandmother or family member who could buy one for them.
Janie explained sometimes larger devices, such as iPads, may be commandeered by other family members while a child is in testing, but she believes the iPod touch is more personal and less likely to wind up in the wrong hands.
The kid-sized apparatus not only provides comfort and entertainment to young patients, she said, but they can help parents communicate with their sick children if verbal communication becomes impossible because of effects of their disease or treatment.
Children can use the devices to play games, listen to music, take pictures or video and send messages so parents can have a glimpse into the world through their child's eyes.
Janie also recalled a blog post she read by a father who lost his son to pediatric cancer. His son had an electronic device and the father still writes about new pictures and messages he finds from his son, now posthumously.
"Knowing what a big hole it is in your soul to have a sick child," Janie said. "Just having that device, having a piece of them makes a difference."
For more information or to donate to the Rylie's Smile Foundation in support of providing iPods to children battling life-threatening illness, go to www.ryliessmilefoundation.org or call 302-226-5390.
