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
Like most not-for-profit organizations, the story behind Ryan House is an inspirational one.
In 2001, Jonathan and Holly Cottor were living in London with their two boys when their son Ryan, only a few months old, was diagnosed with spinal muscular atrophy, a degenerative neurological disorder. With no family support nearby and feeling overwhelmed by their situation, the Cottors turned to the Helen House in London – the first children's palliative care home in the world. The Helen House showed the Cottor family the value of a facility that could provide them with the proper support and services to cope with their young son's disease.
The Cottors decided to return to Arizona in 2003 in order to be closer to their family, but they were disappointed to find out that there was nothing like Helen House in the United States, and from that point forward, they were committed to opening a house like that here.
According to Nancy Flores, Ryan House's PR and marketing director, the Cottors wanted very much to be able to establish a palliative care program that would provide support specifically for children with life-threatening conditions and their families. In 2004, the house, named after their son, officially became a 501(c)(3) non-profit organization, and after years of hard work from community leaders and support from Hospice of the Valley, Ryan House opened its doors in March 2010.
Currently the house is the only respite and palliative support home for children in the state of Arizona and in the southwest.
When he was diagnosed, doctors told the Cotter family that Ryan wouldn't live past 3 years old – he is now 10 and still stays at Ryan House from time to time, said Flores.
The Heart of the Matter
Caring for a child with a life-threatening condition is no easy task. Most of these children require around the clock care and attention and it can be a lot of hard work for a parent – especially when you are trying to manage a household, a full-time job and other siblings – to have that 24/7 care for a child. It cuts back on the leisure and quality time with a child that has only a few precious years left to live.
That is where Ryan House comes in.
The organization's mission is to provide respite and palliative care for these children – respite care being short breaks for the parents from the 24/7 care that these children require, Flores said, while palliative care is adding life to the years that these kids have versus years to their life by providing specialized care for the symptoms and pains of a serious illness.
"Most of the kids are not expected to live past 20 years old," Flores said. "And most of them won't live close to 20."
The conditions are different for every child and many children have more than one condition, Flores said. "We want to provide [our families] support for the journey that they're on and wherever they're at in their journey."
Ryan House really gives parents that time to rest and rejuvenate. Toya Pankey can attest to this as she has been the sole provider and caregiver for her 6-year-old son, Donovan Pankey, for the majority of his life. Donovan, who was a micro preemie, was diagnosed with cerebral palsy, suffers from severe mental retardation and is legally blind. He needs constant watching; while he's eating, or playing, and needs help sitting up.
Before Ryan House, Pankey was spending all of her time at home and was limited to where she could go. "You don't have the luxury or the freedom to just get up and go," Pankey said. "There was nowhere to go before them; you're really just stuck to your own devices."
Since she's been taking Donovan to Ryan House, Pankey has taken about four trips out of state. "It's been great, I don't know what I would do without them," she said. The care that Ryan House provides is truly unique and essential to the community. "It's something that was needed," Pankey adds.
According to Flores, marriages that have a child with a life-threatening condition have a 90 percent chance of failing and there is an 85 percent chance that the siblings end up with some sort of behavioral problems later on in life.
"For us to be able to provide them with that break, we're hoping that they are not going to become one of those statistics," she said. "It gives them the chance to reconnect. And they don't have to worry about their child because they are leaving their child in the care of a certified care team."
The care provided by the house's nurses, certified nurse assistants and doctors can put a parent at ease and it gives them that opportunity to travel for the first time, or perhaps take siblings on a family vacation that they would've otherwise never been able to – or even allow them something as simple as sleeping through the night.
Making the House a Home
Walk through Ryan House and there is one thing you'll notice: it seems nothing like a hospital at all. The halls don't smell of cleaning solution and the nurses are not wearing scrubs. They don street clothes, instead. The murals on the walls in each room and along the halls – all done by local artists – add a cheerful note; and that's when you realize that, more than anything, what Ryan House feels like is a home.
"When they're here, they are home," Flores said. "So if they want to nap on the couch or play games together in the family room, they are free to do that."
The home-like setting at Ryan House includes eight pediatric bedrooms and three family suites for when family and loved ones come stay with the children. The whole purpose of their stay though is to temporarily relieve the parents of the strenuous task of caring for an ill child and to cherish life in the years he or she has left.