Love will conquer all.
The word, “all” can encompass some of the most devastating situations for a person, a family --- even a nation. But at Ryan House, the word carries a weight bound to an unimaginable reality.
“The mission of Ryan House is to embrace all children and their families as they navigate life-limiting or end-of-life journeys,” said Tracy Leonard-Warner, executive director at Phoenix-based Ryan House, a 501(c)3 nonprofit organization.
“We provide palliative and respite care that addresses the emotional, spiritual, and social needs of kids and families. Care is provided from diagnosis to end-of-life in a loving community that offers ongoing support and compassion.”
First based in Scottsdale, the Ryan House now calls 110 W. Muhammad Ali Way home in the heart of the City of Phoenix as it shares a headquarters with Hospice of the Valley.
Named after Ryan Cottor, the Ryan House effort is a place where difficult scenarios are met with meaningful experiences that matter, giving families the environment they need during times of immeasurable personal struggle.
Ryan House was inspired by Helen House, a similar effort in England that served as a safe haven for the Cottor family as they learned of the benefit of pediatric palliative care facing Ryan’s spinal muscular atrophy diagnosis.
Ms. Leonard-Warner points out the emotional, physical and spiritual toll palliative care for a loved one can become.
“Care for kids who use Ryan House’s services is often exhausting, both physically and emotionally for their families,” she said. “Ryan House provides a chance for kids to come have a great time in an environment that is a cross between summer camp, grandma’s house and Disneyland, while their families get a much need break.”
A definition of the kind of care rendered at Ryan House seeks to be care embracing physical, emotional and social elements, Ms. Leonard-Warner explains.
“Our families talk about the like-minded community they meet via Ryan House and are supported by during their journeys,” she said.
“Our young adults and teens remark that Ryan House gives them a place to truly be themselves so they can really relax and not worry about being different than other kids. They have friends here that they can directly relate to and that makes them feel whole in a way that they can’t find anywhere else. And, parents also talk about the relief they feel and peace of mind they have knowing their kids are so well taken care of while at Ryan House.”
When families are faced with the impossible scenario, they turn to Ryan House --- and Ms. Leonard-Warner points out the facility is a one-of-a-kind respite.
“When a family receives the devastating news that their child has a terminal or life-limiting condition, Ryan House provides loving support and world-class clinical care, so they can focus on their family and create cherished memories together,” she said. “Ryan House is the only facility of its kind in the Southwest, and one of only three such facilities in the entire United States.”
Furthermore, Ms. Leonard-Warner explains a strong majority of families going through the transition of palliative and end-of-life care, face it alone.
“According to the National Alliance for Caregiving, 81% of families with children with complex medical needs do not receive respite services, largely due to the lack of availability and/or affordability of services that can accommodate their complex needs,” she said.
“Ryan House is uniquely able to meet these needs with our exceptional caregiving and programs, and we are able to do so because of the support of our community, like the amazing Fiesta Bowl Charities.”
Fiesta Bowl Charities this current grant cycle provided the Ryan House with a $25,000 grant to fund the Creative U Arts and Crafts room where more than 200 children find a respite of fun throughout the year.
“It is our goal to reach all youth and Ryan House certainly reaches a segment of the youth population that has unique circumstances,” said Kristina Chumpol, community relations director at Fiesta Bowl Charities. “We know that when kids are exposed to the arts it can have a healing and transformative effect on their lives. The Creative U program is bringing arts and crafts such as painting, drawing, dress-up, and more to these kids and we are grateful for the privilege to support that.”
For the Fiesta Bowl Charities group, helping all children is the name of the game, which Ms. Chumpol says is a passion of those behind the effort.
“Fiesta Bowl Charities serves youth and families from all walks of life, but also all circumstances in life,” she said. “When I hear the stories of the families who are involved with Ryan House, I am struck with how incredibly challenging their circumstances are, but also the fullness of life and inspiration found in these families.”
Ms. Chumpol explains the mantra of “helping the less-fortunate” is more than just the figments of our imagination --- they are neighbors, friends and coworkers.
“When asked if I think it is important to take care of our less fortunate the answer is yes, absolutely,” she said.
“However, when we say ‘less fortunate’ I believe that there is a much bigger definition than we normally give it credit. Less fortunate can also mean kids and families who are facing incredible odds and tremendous adversity. I see that in the families and youth at Ryan House and it is Fiesta Bowl Charities honor to support the work they are doing.”
--- Kristina Chumpol
Ms. Chumpol says her experience working with Ryan House officials through the Fiesta Bowl Charities arm of the Fiesta Bowl has shown her that every moment counts.
“In my opinion, the participants at Ryan House are experiencing enhanced quality of life due to the activities provided by the program,” she said. “In a situation where Ryan House is often dealing with life-limiting journeys, it is inspiring to give these kids and families the opportunity to make every moment count.”
For nine years, Fiesta Bowl Charities has been a dedicated supporter of Ryan House, Ms. Leonard-Warner points out.
“Fiesta Bowl Charities has been supporting Ryan House since 2011, a year after we opened our doors, and they have been there for us ever since,” she said of the dedicated support from Fiesta Bowl Charities.
“Funds from Fiesta Bowl Charities have helped to provide life-enhancing therapeutic activities for Ryan House kids, allowed us to make upgrades to our Story-of-Me Room where kids can film videos to capture their legacy and stories, made it possible to replace the lift in our pool to make it easier to get all of our kids in and out of the pool safely, and the latest gift will allow us to remodel our Creative U Arts and Crafts Room for greater accessibility for our kids who are in all different sizes of wheelchairs.”
Go to ryanhouse.org