Welcome to Ryan House
You are not alone. Whether you are caring for a child with a new diagnosis or you have been coping with the diagnosis and balancing care for some time, Ryan House is here for you – as are other families who share your situation. (In fact, we invite you to read – and perhaps one day soon to contribute to – the testimonials and family stories available via links in the right hand column of this page).
How can Ryan House help?
Children and families who come periodically to Ryan House may also have services in their own homes, so why choose to come to Ryan House?
- Ryan House gives everyone a new environment built for them. This first-of-its-kind-in-the-Southwest option for 24 hour respite care in a home-like environment is specifically designed to meet the needs of both children and families. The benefits are many and varied, all of which add up to a new level of support you’ll appreciate.
- Respite care – short-term breaks from balancing the rigors of in-home care – puts it all in a new light. Families report that they feel renewed, strengthened, supported and part of an extended family.
- Your ‘family’ of support grows. Many life-threatening conditions or illnesses of childhood are extremely variable, so children and families have an opportunity to establish a relationship with the care team at Ryan House that may extend over many years.
- In addition to respite care, children can begin palliative care services and support from the time of diagnosis, while families gain support with communication, decision-making, access to resources, and emotional needs for the whole family.
- While no one can replace you, care at Ryan House is care held to the highest of standards. Our team is handpicked for clinical and holistic care expertise. Through our licensing, you are assured that Ryan House is held to the highest Joint Commission Standards for Health Care organizations.
Care and Comfort at Ryan House
Ryan House helps you feel as if you have come home and have been embraced by family. Our environment is calm, respectful, warm, welcoming and fun. We make the most of every moment we have together, ensuring that parents and children feel safe and secure.
“Family-centered care” is our mantra. It is the Care Team’s goal to respect and become a seamless extension of the family. Child and family are one unit of care, with the Team respecting individual preferences, values and cultural beliefs. We collaboratively involve the child and family in decision-making by carefully listening, attending to what you communicate and demonstrating mutual respect and trust. By the way, family is defined as all persons who provide physical, emotional and spiritual comfort to the child and who are close in knowledge, care and affection — regardless of genetic relationships. To us, family members may be biological, marital, adoptive, custodial, neighbors, friends, schoolmates or even pets.
Services are available for all children and families, regardless of their financial or health insurance status. Ryan House is entirely donor-supported.
All aspects of care are provided with sensitivity to the child’s developmental stage; personal, cultural, and spiritual beliefs and practices of the child and family; and preparedness to deal with dying or its possibility. Decisions are made by family, including the child to the level of his/her capacity, in collaboration with the care team and additional service providers. Anticipatory loss, grief and bereavement support are offered as components of care to the child and all family members.
Care team members will not attempt to influence families to make decisions that are not compatible with their values. Communication with each child and family is open and honest. Every child receives effective pain relief and symptom management. Every child is treated with dignity and respect, and privacy.
Children with chronic illness often have a level of understanding greater than would be assumed based on their age. Every child is given the opportunity to participate in decisions affecting his or her care, according to age, understanding, capacity, and parental support. Comfort care is pursued aggressively in order to minimize the child’s physical, psychosocial, and spiritual pain and suffering.
We’re here when you’re ready
We want you to feel absolutely confident in our care. It can be really hard to let someone else take over for a while. When your family first comes to Ryan House, you may want to provide all or most of your child’s care. We hope that in your own time, you will trust us to share in the care – or care completely – for your child. When you first arrive, we will meet with you to find out the daily routine and care your child is used to at home and will aim to maintain your child’s routines at Ryan House, too.
Connect with the Care Team
Sometimes the best way to learn something is to try. Please call 602.200.0767 to begin the process. We welcome you when you are ready.
The Story Behind Ryan House
By Holly Cottor
When our family first learned that our youngest son, Ryan was not just a “late bloomer” in the area of motor development, but that he instead was born with a life-limiting diagnosis for which there is no treatment or cure, we probably experienced emotions similar to those that thousands of parents and families experience throughout the U.S. and world on any given day. Upon learning that Ryan was born with Spinal Muscular Atrophy, we discovered that as many as 80% of children diagnosed before their first birthday would likely not survive to their 2nd birthday. Told to take Ryan home and enjoy the time we had with him, we felt devastated, shocked, anxious about what the days or months ahead may bring, and uncertain about the many decisions to make. We felt as though we’d hit a wall both physically and emotionally.
Living in England at that time, and very far away from family in Arizona, Ryan’s physical therapist sensed the sadness and strains we faced. She referred us to a house in nearby Oxford, England where we could take Ryan, as a family or on his own, for short breaks: Helen House.
While unsure of what we would experience at Helen House, but driven to the brink of depression from sleep-deprivation alone, we scheduled our first visit to see if it would be a fit for our family. It was then that we learned that while Helen House offered respite care for children and families, it also offered pediatric palliative care. The caring team with which we met, offered a small brochure for families to further explain the term: “Palliative care for children with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social and spiritual elements.” Although a brief description, we’ve since learned that pediatric palliative care homes offer a lifeline of support to both the children and families caring for them.
Pediatric Palliative Care homes:
- Provide support from the time of diagnosis (sometimes birth) throughout the child’s life
- Provide services concurrent with the child’s and/or family’s hope for a cure
- Welcome whole families so that parents may focus on relationships with spouses and other children/siblings
- Aim to maintain routines for each child, providing care in place of what the parents provide at home often 24 hours a day 7 days a week
- Allow families to connect with others facing similar situations
- Include a caring team that can collaborate with the child’s primary care physician and be instrumental in helping families evaluate care options and facilitate difficult conversations
- Offer essential respite, or short-term breaks, so that parents and families are able to continue caring for their child at home
- Provide opportunities for ongoing friendship and bereavement support for as long as needed
- Are primarily places for enhancing a quality of life
- Are home-like settings with extraordinary amenities, such as art, music, water and pet therapy, for encouraging guests to live their lives to the fullest!
Our family was fortunate to be able to stay with Ryan at Helen House on several occasions and even had Ryan stay on his own for several days while we packed to return to Arizona at the end of March 2003. We were so touched by the care we received at Helen House that we asked during our last stay what we would find in America. They weren’t certain we would.
With the help of family, friends, and exceptional community leaders and organizations, grass-roots efforts led to the founding of Ryan House. With an initial planning grant from St. Luke’s Health Initiatives and a bridge grant from Hospice of the Valley, Ryan House incorporated in August 2004 and received I.R.S. 501(c)(3) status the following spring. The development of Ryan House to this point would not have been possible without community partnerships. As Ryan House will partner with families to provide the very best pediatric palliative care, please take our hand and partner with Ryan House to help offer hope, courage, love, care, and friendship. For so many families, it has not come soon enough.
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