A Song for Jackson
This song is dedicated to Jean, my partner, our son Jackson, the children and families affected by Arginase 1 Deficiency, Urea Cycle Defects, and rare diseases.
My name is Leafy Wilson. In May of 2017, I started writing this song about the experience shared with my partner Jean, our son Jackson (JT) and his physical challenges since birth. The lyrics to this song deal with the parents’ emotions and issues faced when a child or loved one is diagnosed with a rare disease or serious illness.This song is dedicated to Jean, my partner, our son Jackson, the children and families affected by Arginase 1 Deficiency, Urea Cycle Defects, and rare diseases.
JT has a very rare disorder called Arginase 1 Deficiency (ARG1-D). ARG1-D is one of the groups in the Urea Cycle Disorder category. Arg1-D is inherited as an autosomal, recessive-genetic disorder. In states that offer newborn screening, it may be diagnosed at birth before permanent damage is done. Unfortunately, many patients are not diagnosed or are misdiagnosed as toddlers or preschoolers after developing serious irreversible complications.
ARG1-D significantly impacts a family, the patient, and their loved ones. ARG1-D occurs 1 in every 300,000-1,000,000. I believe it is much closer to one million as there are very few patients worldwide. There is no known cure.
Currently anyone diagnosed with ARG1-D faces the difficult challenge of balancing their lives with a very restricted, low-protein diet, horrible tasting formulas, and frequent medical blood draws. Scavenger type drugs with many negative side effects become the “norm.”.
There is hope! Research is evolving and currently working on an enzyme replacement treatment for ARG1-D patients. I am hopeful that not only will the treatment help improve the lives of these patients, but one day a cure will be found!