Lucas & Menkes Disease: From Diagnosis Day to The Disorder Channel

Patient Stories with Grey Genetics

After birth, Lucas spent ten days in the NICU due to a skull fracture he was born with. This was the window of opportunity for him to be diagnosed with Menkes Disease and receive treatment that would have meant a fairly normal outcome. Instead, Lucas went undiagnosed with this rare disease. His parents noted developmental delays at 4 months, regression at 8 months. At 9 months of age, Lucas finally saw a geneticist, and at 1 year of age he was diagnosed with Menkes Disease and given a life expectancy of 3-10 years. Lucas’ father Daniel describes Diagnosis Day as the shock event, the worst day of his life. He also describes how he and his family adjusted and found joy in their time with Lucas, who passed away at age 11 in June 2020. A filmmaker, Daniel co-founded the Rare Disease Film Festival and has now launched a related streaming channel, The Disorder Channel, which can be found through Amazon Fire and Roku.

Related Resources:

Menkes Disease: Finding Help & Hope: A ten-minute documentary about Daniel’s son Lucas

Menkes Foundation

Menkes' Families support group on Facebook

Courageous Parents Network

The Disorder Channel

Disorder: The Rare Disease Film Festival

Daniel’s interviews for the Once Upon A Gene podcast

Rare Together Watch Together - Film Selections from The Disorder Channel in Partnership with Global Genes

Films and Fatherhood

Rare Disease Trailblazer and Co-Founder of Disorder - The Rare Disease Film Festival

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