Kayla Rennie pulls up a chair at my kitchen table this week, bringing a lot of energy and humor to her story about her son, Samson, and his early diagnosis of adrenoleukodystrophy (ALD).  In simplest terms, ALD is caused by a genetic mutation that causes an accumulation of very long chain fatty acids which can then affect the brain, spinal cord, and adrenal cortex.

We get into the science of it all, and Kayla also chats about COVID derailing her goal to become a Spanish educator, the janky part of Children’s Hospital that houses the rare diseases floor, and how she went from being a shy kid to becoming a fierce advocate for her child.

And an update for when you get to the three good things about her week – her test was negative, and that’s great news!

If you would like additional information about ALD and how you can help by donating for research or spreading awareness, consider visiting some of the following sites:
X Out ALD – https://xoutald.org
ALD Connect – https://aldconnect.org
ALD Alliance – https://www.aldalliance.org
NORD (National Organization for Rare Disorders) – https://rarediseases.org

Intro riff by Dale Lytle (concert husband).

All content edited (I use that term very loosely) by Karen Shaak.