Holiday party for children with illnesses lets families 'really be with each other'

Getting out of the house and spending the day together as a family is a rare occurrence for Rita and Homer Benavides and their five kids.

Their 8-year-old sons, Alejandro and Fernando, have mitochondrial disease, a condition caused by dysfunctional energy production. They have low immune systems, meaning they have to avoid exposure to illnesses and certain weather conditions, Rita Benavides said, and transportation is made difficult by their equipment and chairs.

Those worries were dissolved Sunday during a JourneyCare holiday party at Pinstripes in Oak Brook, she said, where all seven family members were able to bowl, make crafts and get into the holiday spirit.

"Here, (Alejandro and Fernando) get a chance to be in a different environment ... and it gives us time to really be with each other in a festive setting," said Rita Benavides of Lake Forest. "It gives us an opportunity to connect with other families and understand how they're going through their journeys."

About 50 children with serious illnesses and their family members attended the party organized by JourneyCare, an Illinois nonprofit offering palliative and hospice care. Kids were able to open presents, visit with Santa Claus, take family photos and bowl with their parents, siblings and caregivers.

The annual event for pediatric patients started six years ago and has grown to offer more activities in a larger space, said Jennifer Mangers, pediatric team manager. The entire party is accessible for all patients, she said, and staff members and volunteers are on site to help.

"We just do this as an opportunity to be able to come to an event they know has been geared toward them," she said. "They know there will not be limitations because we've accommodated for them."

The organization also covers the cost of transportation for those who need it, said Joe Matty, president of the JourneyCare Foundation.

Cindy Guerrero of Palatine said she and her family attend a handful of JourneyCare events each year. Her 19-year-old son, Ryan, has epilepsy, sleep apnea and cerebral palsy, among other medical issues, she said.

"It gives us an opportunity to feel normal for a change, to not have people staring, to feel loved," Guerrero said. "It's an amazing organization, and more people should take advantage of what's available."