Liam Lawson was a remarkable young boy. When he was four months old, Liam was diagnosed with a severe and incurable neurological condition known as lissencephaly. It was the result of a rare and random chromosomal event in utero, which arrested his cognitive and motor development at about four months of age. Liam's fate seemed an unmitigated tragedy at the time; and it has indeed involved a challenging and unpredictable process of acceptance and commitment that has changed the personal and professional lives and priorities of everyone who came to know and love him. There was no way of knowing at the painful start, however, what unexpected joys and invaluable lessons would eventually replace our initial sorrows and fears.
Indeed, the special gift of Liam's life has revealed and reinforced a strength and cohesion among our extended family and friends that has been both enduring and exhilarating and might not otherwise have been so clearly and convincingly demonstrated. For one who never talked, Liam's life and death spoke volumes about the unique bonds and special values of family life. For one who never walked, Liam's life and death led us all on a poignant and personal journey of care and compassion that was painful and unpredictable in prospect, but was positive and irreplaceable in retrospect. Liam has left a remarkable and enviable legacy. He fought the good fight. He will always be missed. He will never be forgotten.
Our experience with Liam has also revealed the inadequacies of our medical care system in attempting to deal with the reality and requirements of treating children with terminal and incurable conditions. While we have made great progress in recent years in understanding and responding to the needs and desires of adults in such circumstances, we have yet to apply those lessons to the care of children with life-threatening illnesses who cannot speak for themselves. To address these issues -- and opportunities - we have established the Liam Lawson Foundation for Pediatric Palliative Care. This initiative is intended to expand awareness and increase options for compassionate care as an integral element of, and not just an alternative to, current clinical therapies for children. I hope that we can count on your support for this effort as it grows and evolves.
Written by Robert O'Brien