From Our Family To Yours

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 was 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 Helen House in nearby Oxford, England where we could take Ryan, as a family or on his own, for short breaks called respite care.

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, it helped us understand that pediatric palliative care homes offer a lifeline of support to both the children and families caring for them.

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 if we would find similar care 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 (now Vitalyst Health Foundation) 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 that point would not have been possible without community partnerships. As Ryan House has partnered with families to provide the very best pediatric palliative care, please take our hand and partner with Ryan House to help offer the hope, courage, love, care, and friendship to children and families navigating unimaginable journeys.

Ryan’s Parents and Ryan House Co-Founders