Press

Son’s plight inspires a first for the Valley

Connie Cone Sexton
The Arizona Republic

A Scottsdale couple wants to build the Valley’s first care home for children with life-threatening illnesses.

Holly and Jonathan Cottor are planning an eight-bedroom, 14,000-square-foot house designed for children like their 4-year-old son, Ryan, who has a muscular disorder and is not expected to live to adulthood.

The Cottors’ project, dubbed Ryan House, would give temporary care to children dealing with such ailments as pediatric cancers, cystic fibrosis and muscular dystrophy.

Parents could stay with their child at Ryan House for a few days or leave to get a break from the stress of care giving. The aim of the non-profit home is to care for the family as a whole, from diagnosis and treatment through the child’s death and bereavement. Each child can stay up to 28 days a year or based on a family’s needs.

The Cottors know firsthand that such a facility can make a difference to families. When Ryan, at 8 months old, was diagnosed with spinal muscular atrophy, they relied on what is considered the world’s first pediatric house in Oxford, England, where they were living at the time.

“We were told by doctors he wouldn’t live to be 2,” Jonathan Cottor, 38, said. “One of the therapists suggested we take him to Helen House, which wasn’t like a hospice for adults. It was a homelike place for children and their families. We were reluctant to go, but then we were, ‘Wow, this is a great place.’ ”

Helen House opened in 1982 and led to dozens of similar houses across Great Britain. When the Cottors moved back to the Valley a couple of years ago, they weren’t able to find anything like it.

So the idea was born to build Ryan House. There is at least one other such house in the United States. The George Mark Children’s House near Oakland, which opened in 2004, has cared for about 90 children.

The Cottors, like many parents, have no idea how long their son has to live. “Where a hospice is for someone who has six months to live, Ryan House won’t be that restrictive,” Holly Cottor said. “Children with life-threatening illnesses often live beyond what an adult would with the same illness.”

Families will not be required to pay for the stay out of their own pocket. The Ryan House board is working on funding and is working with the state Department of Health to see if any Medicaid funding might be directed to cover the cost of the house.

With about $1.5 million raised through donations and in-kind contributions, the Cottors wish is more than just a dream. Several Valley businesses and organizations are lending their help.

St. Joseph’s Hospital and Medical Center is finalizing the terms of a 50-year, $1-a-year lease for 2 acres of land adjacent to the hospital near First Avenue and Thomas Road. The Orcutt Winslow Partnership AIA architecture firm is cutting its costs to provide designs for the house. Kitchell Contractors will serve as construction manager, also for a lower fee.

Ryan House is proposed to open in 2007.

The Ryan House board received a $30,000 planning grant from the St. Luke’s Health Initiative. The Junior League is expected to give proceeds of an upcoming fund-raiser to Ryan House. Information is available at www.thecarecard.org. And Susan Levine, executive director of Hospice of the Valley and a member of the Ryan House board, has lent her expertise to the Cottors and the board for programming.

Although there is support, Ryan House still needs to raise several million dollars to staff and build the house. Information about how to contribute to Ryan House is available at the Web site www.ryanhouse.org.

Ryan House will be staffed with nurses, but the facility will not direct a child’s medical care. “For example, when my son Ryan needs emergency care, he’ll go to Phoenix Children’s Hospital,” Jonathan Cottor said. “His neurologist is at St. Joseph’s, and then he has his day-to-day pediatrician.”

Annie Berlin, director of communications at the George Mark Children’s House, said her facility has been well received and serves families who might otherwise not be able to afford respite help. “We have fielded a lot of calls from other communities,” she said.

Berlin estimates that nationwide about 80,000 children die each year and about 500,000 children are living with some kind of life-threatening illness.

Peoria resident Terri Nichols hopes Ryan House will be built. Her 2-year-old daughter, Destiny Muniz, has the same disease as Ryan.

Nichols, 21, has help, a professional caregiver paid for by her insurance. But having Ryan House will get to supplement that, she said. “And to be around others who understand, that makes a difference,” she said. “When Destiny is around other people who are like her, her eyes just light up.”