In Good Company

Ryan House aims to give families of children with life-limiting conditions the unprecedented: a break


Published by: AZ Society, February 2008 (Also reprinted on Hospice of the Valley website)

Mornings for Holly and Jonathan Cotter are so chock-full of responsibilities that you feel guilty just chatting too long with them over coffee.

The Scottsdale couple are parents of a healthy 9-year-old boy, Ethan, and another boy, 61ŕ2-year-old Ryan, who's coping with a life-limiting condition known as spinal muscular atrophy. A rare and often fatal disorder that prevents bones and muscles from developing properly, Ryan's condition requires the Cotters' almost-constant assistance. Just getting the family going in the morning can be a marathon event.

“Everything takes at least two or three times as long,” says Jonathan, a former Pillsbury marketing exec balancing a new-job search with his demanding home schedule. “Where Ethan can wolf down a bowl of cereal in a minute, Ryan takes about 25. And you can't just say, ‘Go brush your teeth.' You have to do it for him.”

At this particular moment, however, having just dropped Ryan off at his specialized school, the Cotters don't seem in any hurry to vacate their chairs in the outdoor food court at Desert Ridge Marketplace. It's a brisk winter morning, with light jazz wafting through the mall speakers, and both still have a little coffee left in their Starbucks cups.

“This is the kind of thing Holly and I like to do,” says Jonathan, savoring the cool breeze and warm java. “We come here or to a restaurant — wherever — just to have an outing together. It's important to just enjoy life.”

Finding the joy

Those small, yet great, escapes are rare for parents of children with terminal conditions, who, even when not physically aiding their child, can feel constantly “on call.” Occasionally, a little time alone for a couple to recharge their batteries and maybe even have some fun can be the most therapeutic thing for the whole family.

That's the Cotters' basic inspiration behind Ryan House, a first-of-its-kind pediatric respite-care facility slated for construction this spring in central Phoenix. Modeled after the Helen House in Oxford, England, where the Cotters spent time after Ryan, then 8 months old, was diagnosed with the muscle disorder, the planned eight-bedroom, 14,000-square-foot center will offer a cheerful, activity-filled, home-like retreat for children coping with life-limiting conditions — as well as a much-needed break for their parents and siblings.

“When we first heard Ryan's diagnosis and learned 80 percent of infants with spinal muscular atrophy don't survive beyond two years, we thought when his second birthday came, it would be the last,” says Holly, a former teacher. But then, blessedly, a third birthday came and a fourth. “Eventually, we reached the point where we just moved forward and really just started living life to the fullest.”

Having fun is an opportunity seldom afforded to families in the Cotters' situation, who, Jonathan says, are expected to remain either at home or in the hospital battling their child's illness.

Americans don’t accept the death of children, Jonathan says, noting a crucial cultural difference he discovered after the family moved back home to Arizona in 2001. “In England, death is more accepted. The feeling is: ‘Life is short, so make it the best.' Here families are taught to fight to the bitter end. The problem with that is, their child is constantly in the hospital, constantly getting this or that new treatment or drug, and in the process, never getting to enjoy the time they have.

“Then when the parents finally accept the inevitable, they've got maybe two weeks to enjoy just being together.”

Identifying puzzle pieces

The concept of a children's respite has been a hard sell in America. While there are 35 such facilities in the United Kingdom, only one — Oakland's George Mark Children's House, which opened in 2004 — opened in the United States.

Fortunately for the Cotters, their dream of creating a facility providing pediatric palliative care and respite in the Valley found eager backing from an influential friend of Jonathan's mother: Judy Schubert, wife of Kitchell Contractors' president and CEO, Bill Schubert, whose construction firm had been looking for another not-for-profit project.

Judy, in turn, as a Board of Visitors member, had been looking for a new beneficiary for the charity's Care Card program, which donates sales from a retail discount card to a specific cause each year. It was a classic case of perfect timing.

“I got a call from Ryan's grandmother, who asked me, ‘Didn't you have something to do with the Ronald McDonald House in Phoenix?' ” Shubert recalls. Schubert, who also belongs to the Junior League of Phoenix, had steered the committee that created the charitable center's Phoenix branch in 1985 but had recently stepped down from the board. Ironically, she had just been in communication with Linda Hunt, president of St. Joseph's Hospital and Medical Center, who had offered land adjacent to the hospital near First Avenue and Thomas Road to the Ronald McDonald House.

The Ronald McDonald House declined the offer, opting to build its new facility at Phoenix Children's Hospital. Schubert pitched the Ryan House idea to Hunt, who agreed the creation of such a pioneering facility would be an excellent use of the available 2-acre plot and signed off on a 50-year, $1-a-year lease.

“I actually went and spent a day at Helen House,” says Hunt, “and was so impressed by the care and love there that when I came back, I made a commitment to move forward on building the facility.”

Completing the puzzle

From there, everything fell into place “like magic,” says Judy. Kitchell signed on as the contractor, bringing aboard the Orcutt/Winslow Partnership as architects, with both firms donating expertise. To further cut costs, Schubert helped the Cotters apply for tax-exempt 501(c)(3) non-profit status, A volunteer board of directors, chaired by Schubert, formed a partnership with Hospice of the Valley, with whom they will share services. HOV will own the building, and the second floor is designated as adult respite care.

“Most likely some of our nurses will be standing in line to work there," says Susan Levine, Hospice of the Valley executive director, adding that it takes a special kind of person to deal with terminally ill children and their families. “They're people who aren't afraid to love, aren't afraid to cry and yet still maintain their professionalism.”

To date, more than a third of the $6.5 million needed for three years’ operating expenses, furnishing and equipping the pediatric floor has been raised. For the Cotters and the estimated 3,500 other families in Arizona raising children with life-limiting conditions, though, Ryan House, which will offer up to 28 days per year of free respite care to qualifying families, can't open soon enough.

“The reason most parents in our situation don't get out is they don't trust anybody else to care for their child,” says Jonathan. “Ryan House will be a place where they can begin to feel comfortable with someone else doing that. So eventually, they may bring their child to Ryan House and go home and sleep. And eventually, they might even get on an airplane and take an actual vacation!”

By another stroke of luck, Jonathan says, Ryan House will be right along the path of the city's light-rail system, providing families access to downtown activities he's certain many have never felt free to experience.

“We'll be able to tell families, ‘Here's a ticket to the Suns game. Go enjoy yourselves,' ” he says, with a smile. “ ‘Your child is fine here.' ”


Photos by Jill Richards

Holly and Jonathan Cotter with Ryan and Ethan

Susan Levine, Bill and Judy Schubert and Linda Hunt are ready to see their vision become reality.

Hearts & Smarts

Every hour of the workweek, someone starts a non-profit organization in Arizona, according to figures from Arizona State University's Center for Nonprofit Leadership and Management. Out of the roughly 23,000 such organizations registered with the Internal Revenue Service in Maricopa County, it's impossible to tell how many remain active, as the registration remains on the books even if the organization fails.
Experts say the keys to success include collaborating with existing agencies to create a sustainable low-cost model and relying more on savvy corporate tactics than on emotional appeals — methods Ryan House has used in its path from inspiration to incorporation.
“There's a lot of heart behind everyone's efforts,” co-founder Jonathan Cotter says, “but also a lot of smarts.”
“So many keep limping along, doing good work but not necessarily doing good,” says Patricia Lewis, the ASU center's senior professional in residence. In addition, new IRS laws require more paperwork and organization to launch a non-profit agency, Lewis says. “It's not something you can start out of your hip pocket anymore,” she adds.