Josh Tenney is one of those.
I’ve had the opportunity to know Josh through some key milestones in his life, from finally finding The One (took awhile, but she was worth the wait), to his marriage to her, to giddily expecting his first child, to her birth.
Anna Liberty Tenney. A little sweet-pea, if ever there was one.
I also saw Josh go through the pain of seeing his treasured Anna stricken with sunburns so severe, even with limited exposure to the sun and the protection of copious amounts of sunscreen, her eyes would blister shut.
Several trips to the doctor’s office later, as well as traveling cross country to the specialists at the National Institutes of Health in D.C., the diagnosis was confirmed. Anna has XP, an extremely rare condition that has changed how the whole family’s lives.
Some characterize XP as being allergic to the sun, but Josh points out it is much more than that.
“Each day, Anna’s skin is covered with sunblock and lotions,” writes Josh on his blog. “She must remain indoors to be completely safe. Before going outdoors on occasion, Anna must wear shoes, long pants, long sleeved shirts, gloves, sunglasses, and a custom made hat with a specialty UV-blocking plastic face shield.”
Josh has created a blog about his daughter’s life with XP. It’s called Anna Liberty: A Girl Who’s One in a Million, including this post here, which explains how the family is approaching the coming summer, with its longer days, but with the treasured warm, post-sunset hours, when Anna becomes a night owl.
Math for me seldom makes sense. But sometimes, when the one-in-a-million kid scores the one-in-a-million dad, it clicks.