The Hartley Hooligans (On the Loss of Two Children)
In 2015, I began following a page on Facebook chronicling the lives of a family in Kansas. The Hartley Hooligans page is run by Gwen Hartley, mom to Cal, Claire, and Lola and wife to Scott. Like any modern mom, Gwen posts about the trials of family life, photos of their family in themed Halloween costumes, crazy days in their home, and medical issues.
Only in their home, medical issues can mean life or death.
The Hartley’s daughters, Claire and Lola, were both born with Asparagine Synthetase Deficiency. Asparagine synthetase deficiency is a condition that causes neurological problems in affected individuals starting soon after birth. Most people with this condition have an unusually small head size (microcephaly) that worsens over time due to loss (atrophy) of brain tissue. They also have severe developmental delay that affects both mental and motor skills (psychomotor delay). Affected individuals cannot sit, crawl, or walk and are unable to communicate verbally or nonverbally. The few affected children who achieve developmental milestones often lose these skills over time (developmental regression). People with this condition generally do not live past childhood.
But don’t tell Gwen Hartley that. Dr. William Dobyns, a child neurologist, made that mistake when Claire…
