rare medical conditions

'Pearly has taught me the beauty of being weak': A 5-year-old odds-defier's must-read obituary

Grab a tissue.

You'll need it before reading this heartwarming — and heartwrenching — obituary.

On its front page today, The Tennessean reported on the death of 5-year-old Pearl Joy Brown.

The Nashville newspaper notes that the little girl "defied the hardships of a rare medical condition and survived past birth."

And the story absolutely nails the crucial religion angle (not for the first time). Forgive me for this longer-than-usual blockquote:

"Pearly never spoke, she never got up, she never did anything with her body," her father, Eric Brown, said. "Yet somehow God did more through her than anyone I know is able to do."
Doctors diagnosed Pearl with Alobar holoprosencephaly at her mother's 20-week ultrasound. The rare genetic condition is almost always fatal, and a specialist advised her parents to end the pregnancy.
But having seen the heartbeat, Pearl's parents, Eric and Ruth Brown, persevered — prepared for the reality that they may not bring her home from the hospital.
Pearl, a tiny 4 pounds, 3 ounces, was born in the early hours of July 27, 2012. 
Her brain development had stalled the first weeks in the womb. The genetic disorder created a cleft in her upper lip. She had seizures and respiratory issues, and she had an inverted nose and, as her father remembers, a beautiful three-lipped smile.
She also had brilliant blue eyes and a bright burst of red hair.
Pearl was the third child of Eric and Ruth Brown, and her parents believed everything about their daughter was part of God's plan.
"When it seemed as though God was wanting Pearly to thrive, we supported her," Eric Brown said Monday, just a few days after his younger daughter's death.
"And when it came time to send Pearl home, we had to support that, as well."

Wow, what faith!


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