Finding their young and playful world

For those with cystic fibrosis, there's a litany of medicines to be taken every morning and night.

For Rob and Paulette Montelone, it's triple the dosage as they distribute the medication to the three of their five children who have the disease. They also apply a shaking vest on them that loosens the damaging mucus that builds up and scars their lungs.

On Thursday morning, the family found themselves at the Back Bay for a different kind of medicine.

Beaming and snapping pictures of their children stand-up paddleboarding, the Yorba Linda couple said inhaling the saline mist from saltwater reduces the disease's damage.

"It's like God's medicine, really," Rob Montelone said. "Doing sports like this … really prolongs [their] life."

The Montelone kids were among 18 with the life-threatening disease learning how to paddleboard at the Newport Aquatic Center as part of the Miracles for Kids day camp.

This year is the first that the group has partnered with a public safety organization. The Newport Beach police and fire associations will sponsor families in the area, helping with mortgage, car payments or groceries if the family is cash-strapped because of mounting medical expenses.

Amy Steele said that after she was laid off in June 2011, the group helped her make mortgage payments while her 9-year-old daughter Alisha received treatment for leukemia.

The direct assistance was one of the main reasons the Newport Beach Police Assn. chose to get involved with the organization, said its president, Mike O'Beirne.

"It's an opportunity for us to connect with the community," he said.

Organizers hope to eventually involve other agencies from across the county with contributing to family expenses and visiting with children.

After the kids went paddleboarding, a fire truck and motorcycle officer came for a visit, said program manager Pegah Shakeri.

The group's goal is to draw children away from the unpleasantness of treatments and hospital visits, and back into the playful world of being young. Miracles reaches out to young people affected with illnesses who range from a few months of age to 21 years old.

"These activities are such a great diversion from the normal grind of medication," Craig Steele said. "It lets them feel like a kid again."

The program has helped the Montelones beyond Thursday's excursion.

With the group's help, the Montelones said they received Easter baskets and Christmas presents to help them offset their health-care costs.

"With three kids with CF, the medical expenses are astronomical," Paulette Montelone said.

Twitter: @lawilliams30

Copyright © 2019, Daily Pilot
EDITION: California | U.S. & World