Liam McNamara – the inspiration behind our vision.
On November 10, 2005, our twin sons, Liam and Nathaniel, were born. Shortly after birth, Liam was diagnosed with lissencephaly (Miller-Dieker syndrome), an incurable and devastating neurological condition. The average life span for someone with his condition is two years; Liam was with us for 16 months.
Through all of the challenges of caring for Liam and accepting his fate, we found joy in his sparkling blue eyes and learned indelible lessons of what a legacy should be. Liam taught us how to love unconditionally, find patience where there seemed to be none, and take pride in the smallest accomplishments. He gave us one last gift before he left – to be able to hold him and love him while he took his last breath. We will miss him forever.
We discovered other things while caring for Liam, including the shortcomings of the medical system for families spending days and weeks in the hospital with a seriously ill child. Families like ours – overstressed by trying to balance normal family life with caring for a seriously ill child – need support. During one of Liam's final hospital stays we were introduced to the concept of pediatric palliative care. It struck a deep chord with us.
We became determined to promote the importance of pediatric palliative care and make it available to other children and their families, specifically, at the onset of diagnosis. We know, and the medical community is learning, that introducing palliative care – especially when a family is just learning of their child’s condition – is an integral piece of providing the best care possible.
We also found, after spending countless hours, days and even weeks with Liam in the hospital, that the setting was a difficult place to function as a family. We decided that in addition to educating clinicians on the necessity of pediatric palliative care, that the physical setting needed to change. And thus, Liam’s Room was created – a place for care, love and hope.
“Our Vision is that every patient who requires pediatric palliative care will receive it so that the family can focus on what matters most – embracing their time together.”
Peter and Lisa McNamara
Michaela, a child who has stayed in a Liam's Room.
Liam's Room Educates
Liam’s Room funds the education of health care providers on the implementation of pediatric palliative care by attending seminars, conferences and training programs throughout the country. Whether curative treatment is available or not, pediatric palliative care needs to be offered to any child facing a potentially life limiting condition – to promote quality of life, for both the child and their family. We also work to increase awareness among the wider medical community and the general public through publicity and presentations.
Liam's Room Transforms
Liam’s Room creates custom designed, home like, inpatient pediatric hospital rooms – “Liam’s Rooms”, where seriously ill children and their families can experience more of the comforts of home. These specially designed inpatient rooms provide a more welcoming environment for the entire family. Sofas, recliners, refrigerator, homework space, in-room video games and movies help to create a home-like atmosphere that eases the inherent difficulties of a child’s prolonged hospital stay.
Liam's Room Locations
a place for care, love and hope
Each Liam's Room is designed to create a comfortable environment for patients and their families. These are a few words of gratitude from families who have stayed in a Liam's Room.
Pediatric Palliative care is specialized medical care for children with serious illnesses. It focuses on providing relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the child and the family. Pediatric palliative care is provided by a team of doctors, nurses and other specialists who work together with a child’s other doctors as an extra layer of support. It is appropriate at any age and at any stage of an illness and can be provided along with treatment meant to cure. Above all, pediatric palliative care is family-centered. It helps with communication and coordination of care.
Pediatric palliative care is a major focus area in medicine today, attracting national attention for its whole-family and multi-disciplinary approach to healthcare. If you or someone you know is caring for a seriously ill child, please consider the resources below for additional information about palliative care.
Research has shown that pediatric palliative care services may increase overall satisfaction with care for patients and their families. Yet, many pediatric health care providers hesitate to recommend palliative care for their patients, and parents and caregivers are often unaware of its benefits.
- American Academy of Pediatrics Section on Hospice and Palliative Medicine
- Center to Advance Palliative Care
- Children's Hospice and Palliative Care Organization
- Initiative for Pediatric Palliative Care
- National Hospice and Palliative Care Organization
- NIH Palliative Care: Conversations Matter
- Palliative Care for Children
- Pediatric Palliative Care: Making The Case
- Pediatric Palliative Care Field Guide