Most parents know the feeling — the mixture of anticipation and guilt at the prospect of a vacation without the kids. You work hard to get things in order at home and line up family or friends you trust to care for your children in your absence. The time comes for a nervous (and maybe tearful) goodbye, that last look before the children disappear from view…and then it’s time to relax! Your precious family is in good hands and it’s your chance to enjoy some well-earned time away.
But what about the parents of a terminally ill child? Even a night or two away — let alone dinner and a movie, a good night’s sleep or time for siblings — is out of the question when their child’s safety, comfort and very survival requires round-the-clock home care. The strain of such responsibility and constant vigilance takes its toll. Careers are cut short. Siblings suffer from their parents’ unintentional lack of attention. Marriages fall apart. Other family members and friends may be willing to help, but parents of these children know only too well that they alone are the ones who can best understand and handle the critical care their child needs.
The story of Ryan House begins with a 7-year old boy who wasn’t expected to see his second birthday. Ryan Cottor of Phoenix was born in 2001, while his parents, Jonathan and Holly Cottor, and his brother Ethan, now 10, were living in England. At 8 months, Ryan was diagnosed with spinal muscular atrophy (SMA), a rare motor neuron disease that affects muscles used for crawling, walking, head and neck control, swallowing and breathing. The diagnosis was devastating and offered little hope. Ryan needed constant care. His parents rarely left his side.
Physically and emotionally drained, the Cottors were relieved to find Helen House, a palliative and hospice care center in Oxford. At this “home away from home,” they received loving, professional care for Ryan, along with support, understanding and kinship with other families in similar situations. Ryan’s time at Helen House gave his family the chance to rest and recharge their batteries. Whether they stayed together in a family residence at Helen House or spent some time away, they were assured that Ryan’s needs would be met. The respite from their grueling schedule gave them renewed energy for the demands of caring for Ryan on their own.
The house a community built
In 2004, after the Cottors had returned to the Valley, Ryan’s grandmother, Sharon Cottor of Scottsdale, was eager to share their remarkable experience at Helen House. She contacted Judy Schubert, a friend who was then involved with Ronald McDonald House in Phoenix, an organization dedicated to children like Ryan and their families. Could a concept like Helen House, where families could seek respite from the rigors of caregiving and find child-centered resources for their ill children, be duplicated in Arizona? Could the Valley have its very own “Ryan House?”
Schubert’s first reaction was “what has taken this concept so long to get here? There should be a Ryan House in every big U.S. city.” Schubert’s long history of involvement in various Valley causes made her the perfect catalyst for a community-wide effort that in late 2009 will result in the opening of Ryan House, a pediatric palliative care center, in central Phoenix.
Palliative care, especially for children, is a relatively new concept in American society. We simply don’t expect children to die. Even the better-understood concept of hospice care—specialized care for patients in their last phase of life — has become common only in the last 25 years.
Europeans more readily accept death as a part of life; they are more pragmatic about it. Susan Levine, executive director of Hospice of the Valley in Phoenix, notes the culture of independence in America — “it’s my child” — and the feeling that we’re the only ones who can correctly take care of our own. “European culture is so different,” she says. “More family members are involved in taking care of an ill relative. But everyone can’t always take care of their loved one, as much as they’d like to.”
The goal of palliative care is to provide the best possible quality of life for patients and their families, “adding life to years versus adding years to life,” as Holly Cottor so aptly describes it. Palliative care incorporates aspects that include but reach beyond medicine to address the whole person: psychologically, socially and spiritually. It provides stimulation of the senses through art, music, movement, nature, friendship, entertainment and interaction — all of which offer pleasure, enjoyment and a degree of normalcy in the midst of the pain and suffering that burden the terminally ill and their families.
As chair of the Ryan House board of directors, Schubert has helped pull together a collaboration of Valley organizations and community leaders whose experience and resources have resulted in a synergy that is nothing short of extraordinary.
Schubert is a member of the Board of Visitors, the Valley’s oldest charity dedicated to healthcare in metropolitan Phoenix. At the time she talked to Ryan’s grandmother, the board was in search of a new project to add to its extensive roster of charitable work. Board members embraced Ryan House and have since raised more than $500,000 for it through the Care Card program (see sidebar).
In 2004, Ryan House was established as a 501(c)(3) non-profit organization and, with a grant from St. Luke’s Health Initiatives, a business plan was formed. Schubert’s friend Nancy Martin of Phoenix came on board as executive director in 2006, bringing extensive philanthropic experience, including the Rosson House project at Heritage Square, with her.
Hospice of the Valley also has been involved from the beginning. When Holly Cottor first shared her Helen House experience with Levine four years ago, the hospice executive director thought it was “a dimension we’d love to embrace…but it wasn’t the right time.” Hospice of the Valley did, however, make a workroom available at its offices so Holly could continue her Ryan House campaign.
A turning point came when Levine visited the George Mark Children’s House in San Leandro, Calif., the first children’s respite and end-of-life care facility in the country. Staff there offered valuable guidance and information to Ryan House organizers. Plans were developed to combine Ryan House with Hospice of the Valley, putting the pediatric palliative care center on the first floor and a hospice care center for adults on the second floor. Hospice would own the building; for Ryan House, being part of an existing operation would ensure efficiency and economies of scale.
Schubert then introduced the Cottors to St. Joseph’s Hospital and Medical Center CEO Linda Hunt, who visited Helen House during a business trip to the United Kingdom and came back “knowing we had to do this.”
“In the past, there were extended families to support people,” says Hunt. “Today, families are spread all over the country, often isolated and unable to really ever have downtime from care, especially with sick children. Not a lot of places can handle these children.”
St. Joe’s owned a vacant plot of land on the northwest corner of Merrell Street and First Avenue, just north of Thomas Road. Hunt made an offer to Ryan House: “We’ll lease the land to you for $1 a year for 50 years — and I’ll give you the $50!”
The location is strategically positioned for Ryan House families, with access to light rail, bus service and all of the amenities of downtown, not to mention proximity to the hospital. Ways in which St. Joe’s and its physicians will support Ryan House, including providing a medical oversight committee, are being explored.
Judy Schubert had yet another contact to bring to the table. Her husband, Bill Schubert, is CEO of Kitchell Corp., an Arizona-based construction company. He also happens to be on the board of St. Joe’s. As part of its corporate mission, Kitchell donates construction services to one non-profit project each year, and in 2005, Ryan House was chosen.
Orcutt/Winslow Partnership of Phoenix, a Valley architectural firm with extensive experience in specialized residential architecture, offered to draw up the plans. The unique design of Ryan House includes family suites and patient rooms, a playground, garden, spacious patios and areas for art, music, pet and water therapies along with administrative offices.
Groundbreaking for the facility took place on Ryan’s seventh birthday in April. “This whole project has been sprinkled with fairy dust,” says Schubert. “It’s just miraculous what has happened in the past four years.”
The value of reprieve
Only other families coping with the daily pressure of caring for an ill child — the medications, treatments, equipment, sleepless nights, hospital visits, even resuscitations — can truly understand what families like the Cottors experience as they try to give Ryan as normal a life as possible.
Christine Hoffman of Scottsdale learned about Ryan House from a nurse during one of many hospital visits she made in 2005 with her daughter Olivia, who is now 6. Olivia has metachromatic leukodystrophy (MLD), a rare disorder that causes the protective coating around her nerves to slough away, leaving her with a complete loss of motor skills,
.
Olivia’s regression since birth has been rapid, says Hoffman. “Not only are you dealing with a child with a terminal illness, but you lose the child you knew, which is so difficult.” Olivia requires 24/7 home care, which can be “very, very stressful because you’re always on alert. It zaps your energy,” says Hoffman. She can’t wait for Ryan House to open. It will give her family a break — a chance to “do some normal things with the boys [2-year old twins Will and Carter] like camping, going to Sedona…something good for them. And not only will Olivia get excellent medical care, but she’ll be in an environment where she’ll have a good time and enjoy herself.”
When Kimber Kumelski moved to Phoenix from California in 2004, she had just lost her 4½-year old daughter, Alexandra Lynne (“Lexi”), to an extremely rare neurological condition called semiholoprosencephaly, or HPE. An avid runner, she learned about a race sponsored by DC Ranch in Scottsdale to benefit Ryan House. She immediately began promoting the cause. “This is no coincidence that I found this organization,” says Kumelski. “How vividly I could see the need for it!”
Before she died, Lexi required round-the-clock critical care to address her condition, which included breathing issues and seizures. Kumelski took a leave from her teaching job and got nursing help at home. The daily ordeal was “emotionally, physically and mentally beyond anything you can comprehend.”
Parents can’t take care of their child if they can’t take care of themselves, she says. “Ryan House is that ray of hope that understands the value of mental reprieve, even if it’s just to take a nap.”
Berdette and Frank Carrasco of Glendale knew something was wrong when their 8-month-old son Jacob wasn’t meeting typical developmental benchmarks. With a diagnosis of encephalopathy, a disease affecting the brain, Jacob’s first birthday brought seizures and screaming fits that would become a constant source of terror for his family. Berdette Carrasco, a labor and delivery nurse at Arrowhead Hospital, lost count of the times she had to resuscitate her precious son.
When Jacob was 3, a friend gave Carrasco a book on palliative care. Then she found Ryan House online. She contacted Nancy Martin, thinking, “What a great project. I can’t wait for Jacob to be part of it.”
Jacob won’t get a chance to experience Ryan House; he died in July 2007 at the age of 5. Carrasco, however, remains committed to Ryan House. Involvement is both “painful and healing,” she says, “and brings me to the next level of grief” — where she can concentrate on making something positive of her family’s loss. She is a member of the professional services committee at Ryan House — a group of nurses, therapists, social workers and others whose training and expertise will enhance the skilled care at Ryan House.
Beyond comfort for families, Ryan House offers an opportunity for medical professionals to experience and better understand the essence of palliative care. Unlike end-of-life care, palliative care is “I’m going to give you a great life while you’re here” care, Carrasco says. She wants to help develop an anticipatory grief and bereavement program at Ryan House for families who will lose their children after having done their passionate best to make life more livable for them.
At Ryan House, “parents won’t feel so alone,” reflects Carrasco. “There will be companionship, a connection with people. Ryan House [also] will create an awareness within the community, which is a huge thing.”
Executive director Martin marvels at the community connections that have formed as Ryan House has blossomed. “People understand,” she says. “They can relate, whether they have themselves experienced caring for an ill child or know of a similar situation. Something to look forward to is something to give you hope.”
Ryan’s family could not agree more. Holly Cottor echoes the words she has heard her mother-in-law, Sharon, say: “Ryan House will be like someone stepping in for a sprint so the caregiver can endure the long run.”
UPDATE: Ryan Cotter, the inspiration behind Ryan House, died Dec. 7, 2018 from from complications related to Spinal Muscular Atrophy. Ryan, who was in his senior year of high school and had been accepted to ASU’s Digital Culture program, was at Ryan House, surrounded by family and his Ryan House team of medical professionals, when he died.
Pediatric palliative care — by the numbers
- Nearly 2 million children in the U.S. have life-limiting conditions including cancer, muscular dystrophy, cerebral palsy and other genetic disorders.
- Approximately 400,000 children in the U.S. require intensive, round-the-clock care.
- In Arizona, approximately 3,500 children face life-limiting conditions.
- 90 percent of marriages involving a child with a life-limiting condition will end in divorce and 75 percent of siblings will develop behavioral challenges.
- Ryan House will cost more than $6 million to build and $1.5 million annually to run.
- Families will be able stay up to 28 days, free of charge, every year.
Learn more about palliative care
Ryan House • ryanhouse.org
Helen and Douglas House • helenanddouglas.org.uk
(The name was changed after teen palliative care was added.)
National Hospice and Palliative Care Organization • nhpco.org
(Includes information on The Children’s Project on Palliative/Hospice Services.)
