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For sick children and their parents, a respite at Phoenix's Ryan House

Published: Thursday, September 29, 2011

Updated: Monday, October 3, 2011 14:10

Ryan House 14

Ryan A. Ruiz

Ryan House facilitates that not only by providing the appropriate therapies, activities and support to children with life-threatening conditions and their families, but the house also offers family-focused activities which include art, pet and music therapy, massage therapy, advocacy, consultation and emotional and spiritual support, Flores said.

A fully functional, full-service kitchen is available for parents and volunteers to cook their own lunch or bake cookies with the kids. The sensory room, a favorite room in the house, is a fun, dazzling display of lights, shapes and objects that is used to stimulate the children's brains.

"We have some kids who have these amazing minds, it's just their bodies that are failing them," Flores said. So we always want to push the children wherever they are at, developmentally."

Pankey's son Donovan loves to spend time in the music room, she said, and the hydrotherapy room – which is a small indoor swimming pool – provides her son, as well as many other children in the home, with a soothing and often fun experience they probably couldn't get anywhere else.

The house also includes an art room, a computer room and a sanctuary room for parents. This room is meant to be a place for parents to come and relax – to take time to think, talk to nurses, doctors, spiritual leaders, Flores said, without having to worry if their child may be coming in on them.

Giving Back

There are an estimated 5,000 children in Maricopa County alone, said Flores, who could use the services at Ryan House. "We've really only scratched the surface of that," she added. "We've been doing a lot of outreach and getting the word out that Ryan House is here and we can help."

Along with their outreach, Ryan House is always looking for support from the local community, which can come in the form of donations, in-house and event volunteers. "Because we are truly a non-profit, we do not charge a penny to our families, we don't receive any insurance reimbursement," Flores said. "So we are always asking the community for help."

The volunteers at Ryan House, Flores said, are local people who genuinely want to be there. "They want to help our kids and our families and they want to give back to the community in that sense."

Ryan House welcomes volunteers of all types, but there are a number of students from colleges across the state who volunteer at the house each year. Mario Roman, a sophomore at NAU has been volunteering at the house for about eight months and said the experience has been one of the most rewarding.

"It's one of the best volunteering experiences because all you really do when you are there is have fun," he said.

Volunteers are definitely expected to have fun with the children: play games, put together puzzles, watch a movie, play outside, bake, and really, just help them be a kid. It's a privilege they unfortunately don't get too often.

"They really help and are essential to our care team," Flores said. "We have kids that need care and attention and they can be given that care by our volunteers."

What Ryan House is doing is indeed very unique. "In the medical field there is a huge emphasis on adults and I feel like sometimes children are overlooked," Roman said. For that reason, and to be sure that their volunteers are prepared to deal with the circumstances of some of the children, Ryan House has all volunteers go though two days of training to learn about the house, its missions, goals and also how to interact with the kids, Flores said.

The best part of the job, Flores adds, is hearing the laughter and seeing the smiles and memories that are created at Ryan House. "It's an amazing experience to be a part of those memories that those children are having."

However, "the difficult part," Flores said, her voice softening and dropping to a loud whisper, "is when we do lose a child here, you know? It's a very sad part because kids aren't supposed to die."

In their first year of operation, Ryan House has lost 22 children and provided over 34,000 respite-care hours to families. Children are memorialized through scrap-booking, journaling, handprints and lots of photos and videos made from their time spent at Ryan House – all things that volunteers help them create.

"It takes a special person to be in this setting because we are dealing with children who have a life-threatening condition and there are times when we have children pass away, which can be very hard on a person," Flores said. "It's definitely for someone who really wants to give back and who can commit a little more time being an in-house volunteer."

In-house volunteers are asked to commit to a minimum of four hours a week, but for the weak of heart, there are still plenty of other opportunities to support Ryan House. The organization is constantly looking for event volunteers to help with fundraising events, speakers to speak at community functions, or simply help with clerical work in the office.

Regardless of how you contribute, Ryan House is gracious for any amount of support. Marcos said that it is time well spent.

"It has opened my eyes to so many things," Roman said. "It's inspirational to see children facing everyday challenges be so positive."

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