By this time next fall, the Valley will be a better (and better-equipped) place for children with life-threatening illnesses.
When Holly and Jonathan Cottor learned that their son, Ryan, had spinal muscular atrophy type I-II, they were living in London with no family nearby. Ryan’s physical therapist at the time recommended that the family pay a visit to Helen House, the world’s first children’s palliative care home.
“In England, they do call it a children’s hospice; and I think from my own American background when I prepared to visit for the first time, I thought what I would see was signs of end of life,” Holly Cottor says. “But it was more full of life, with children—some of them with very serious or chronic illnesses—just going about and enjoying life and having fun. So it was just the opposite of what I think I expected.”
After moving back to the Arizona in 2003 and learning that the only similar facility to Helen House was the George Mark Children’s House in Oakland, Calif., the Cottors began weighing their options. In 2004, the Cottors began rallying support in order to establish a model similar to Helen House in the Valley. Land donated by St. Joseph’s Hospital and Medical Center and a relationship with Hospice of the Valley finally made the vision a reality in 2007. When the new Ryan House facility broke ground this past April, huge strides were made toward offering respite and palliative care to families on this side of the pond.
“These are the kinds of families that typically haven’t had a family vacation in years because they feel like there is too much equipment to pack up for their children or it’s just too far of a distance to be away from their specialist or their primary care doctors,” Holly Cottor says. “And that it’s too difficult to coordinate something like that.”
Featuring 24-hour care, the 11,000-sq.-ft. first-floor pediatrics division of Ryan House will offer warm-water therapy, a sensory room, music therapy, art therapy and pet therapy. The upper level, measuring approximately 9,000 square feet, will be operated by Hospice of the Valley and offer similar care for adults. Each child is allowed 28 days of stay at the facility each year at no cost and unlimited lengths of stay and care when nearing the end of life. The pediatric level also offers bedrooms for families who wish to stay at Ryan House with their child.
“The whole idea behind it is you give [the family] a break,” says Nancy Martin, executive director for Ryan House. “And often times, those families who care for these children 24 hours a day are reluctant to leave them in the very beginning.”
Once parents reach a comfort level and know that their child is being cared for the way they want them to be cared for, they can feel more comfortable leaving the child another time in the future, Martin says.
“I never knew that this kind of model of care existed until we needed it,” Holly Cottor says. “So I think most people are in that situation—you don’t realize how important it is until you need it.”
The new facility is slated for completion in fall of 2009.