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